bioethics/women’s studies/science, technology, and society
“This book is insightful, compelling, analytically rigorous, and politically relevant. It forms a complex, rich portrait of fetal medical technologies in the late twentieth/ early twenty-first century. Looking Within will be a major contribution to feminist studies of reproduction, medical sociology, medical anthropology, bioethics, history of medicine, and science, technology, and society studies. It also will be relevant to a popular audience interested in women’s health, reproduction, and medical technologies.” —Monica J. Casper, Department of Sociology, Vanderbilt University
Deborah Blizzard is Assistant Professor of Science, Technology, and Society at Rochester Institute of Technology. Basic Bioethics series
Looking Within Blizzard
RIT/ETC Photo
“In this most visual of eras, what bioethical issues are at play when doctors ‘scope’ the fetus? In what is the first comprehensive study of fetoscopy, Deborah Blizzard’s ethnography gives a stimulating look at the many meanings of this transgressive and transformative medical technology.” —Susan Squier, author, Liminal Lives: Imagining the Human at the Frontiers of Biomedicine
Looking Within
“Blizzard’s sensitive and fascinating ethnography explains the risks and rewards of fetoscopy in riveting and sometimes heartbreaking detail. Her obvious respect and affection for the clinicians, women, and families who undergo this little-known procedure mark Looking Within as a welcome addition to the burgeoning scholarship on reproductive imaging technologies and fetal politics in the clinic.” —Lynn M. Morgan, Department of Sociology and Anthropology, Mount Holyoke College
Looking Within A Sociocultural Examination of Fetoscopy Deborah Blizzard
A Sociocultural Examination of Fetoscopy
“Looking Within presents a deft analysis of fetoscopy, an emergent technology hyped as the salvation of ‘miracle babies’ which is actually an attempt to save dying fetuses. Through her beautifully written and thoughtful ethnography of the emergencies that bring pregnant women and their supporters to one U.S. hospital, Blizzard reveals the deep emotional and expert technical work that ground this controversial intervention. Blizzard conveys both the gravity and hope through which health care providers, researchers, and potential parents all enter the operating theater, and cope with its consequences. This is an excellent contribution to science and technology studies as well as to the anthropology of reproduction.” —Rayna Rapp, Department of Anthropology, New York University
The MIT Press Massachusetts Institute of Technology Cambridge, Massachusetts 02142 http://mitpress.mit.edu
978-0-262-02616-1
0-262-02616-3
Deborah Blizzard
In Looking Within, Deborah Blizzard examines the highrisk in utero surgery known as fetoscopy, considering it as both cutting-edge medical technology and as a sociocultural construction of patients, their social networks, and medical providers. She looks at the way individual experiences shape these procedures and how fetoscopy affects individuals (both patients and providers) on a personal, emotional level. Based on an elevenmonth ethnographic study of the fetoscopy practice at a community-based hospital and further interviews with former patients, Looking Within offers a vivid picture of the sometimes conflicted, often desperate, and always emotional lives of those undergoing fetoscopy, and challenges current assumptions about normal and appropriate pregnancy experiences. To convey the complex reality of fetoscopy, Blizzard draws from the experiences of the real patients she interviewed for the book to present the fictional case of Melinda and Joe, taking them through the entire process, from diagnosis to decision to outcome. She then discusses the emergence of fetoscopy as an accepted form of high-risk obstetrical care, how fetoscopy programs are established at hospitals, and why otherwise healthy women consent to surgery. Blizzard examines the use of fetoscopy in single-fetus and in twin pregnancies, looking at how religion, culture, society, and medical science inform any understanding of who or what is in utero (a baby? a tumor? a mass?). She also discusses definitions of loss and success, and the narratives patients and their social networks construct to make sense of them. Looking Within will help physicians and nurses improve the development and delivery of fetoscopy procedures, help patients understand this new technology, and help scholars evaluate fetoscopy’s bioethical, social, and cultural implications.
Looking Within
Basic Bioethics Glenn McGee and Arthur Caplan, editors Peter A. Ubel, Pricing Life: Why It’s Time for Health Care Rationing Mark G. Kuczewski and Ronald Polansky, eds., Bioethics: Ancient Themes in Contemporary Issues Suzanne Holland, Karen Lebacqz, and Laurie Zoloth, eds., The Human Embryonic Stem Cell Debate: Science, Ethics, and Public Policy Gita Sen, Asha George, and Piroska Östlin, eds., Engendering International Health: The Challenge of Equity Carolyn McLeod, Self-Trust and Reproductive Autonomy Lenny Moss, What Genes Can’t Do Jonathan D. Moreno, ed., In the Wake of Terror: Medicine and Morality in a Time of Crisis Glenn McGee, ed., Pragmatic Bioethics, 2d edition Timothy F. Murphy, Case Studies in Biomedical Research Ethics Mark A. Rothstein, ed., Genetics and Life Insurance: Medical Underwriting and Social Policy Kenneth A. Richman, Ethics and the Metaphysics of Medicine: Reflections on Health and Beneficence David Lazer, ed., DNA and the Criminal Justice System: The Technology of Justice Harold W. Baillie and Timothy K. Casey, eds., Is Human Nature Obsolete? Genetics, Bioengineering, and the Future of the Human Condition Robert H. Blank and Janna C. Merrick, eds., End-of-Life Decision Making: A CrossNational Study Norman L. Cantor, Making Medical Decisions for the Profoundly Mentally Disabled Margrit Shildrick and Roxanne Mykitiuk, eds., Ethics of the Body: Post-Conventional Challenges Alfred I. Tauber, Patient Autonomy and the Ethics of Responsibility David H. Brendel, Healing Psychiatry:Bridging the Science/Humanism Divide Jonathan Baron, Against Bioethics Michael L. Gross, Bioethics and Armed Conflict: Moral Dilemmas of Medicine and War Karen F. Greif and Jon F. Merz, Current Controversies in the Biological Sciences: Case Studies of Policy Challenges from New Technologies Deborah Blizzard, Looking Within: A Sociocultural Examination of Fetoscopy
Looking Within A Sociocultural Examination of Fetoscopy
Deborah Blizzard
The MIT Press Cambridge, Massachusetts London, England
© 2007 Massachusetts Institute of Technology All rights reserved. No part of this book may be reproduced in any form by any electronic or mechanical means (including photocopying, recording, or information storage and retrieval) without permission in writing from the publisher. For information about special
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This book was set in Sabon by SNP Best-set Typesetter Ltd., Hong Kong Printed on recycled paper and bound in the United States of America. Library of Congress Cataloging-in-Publication Data Blizzard, Deborah. Looking within: a sociocultural examination of fetoscopy / by Deborah Blizzard. p. ; cm.—(Basic biothics) Includes bibliographical references and index. ISBN-13: 978-0-262-02616-1 (hardcover: alk. paper) 1. Fetoscopy—Social aspects. 2. Social medicine. 3. Prenatal diagnosis. I. Title. II. Series. [DNLM: 1. Fetoscopy—psychology. 2. Sociology, Medical. 3. Culture. 4. Fetoscopy—ethics. WQ 209 B649L 2007] RG628.3.F47B5554 3007 618.3′2075—dc22 2006033361 10 9 8 7 6 5 4 3 2 1
With sincere appreciation for all that you have done, this book is lovingly dedicated to my parents Joan and Richard Blizzard
Contents
Series Foreword ix Acknowledgments xi Prologue
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1 Fetoscopy as Lived Experience: A Closer Look
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2 Why Fetoscopy? Why Now?: An Ethnography of a Medical Technology and the Emotions That Fuel It 41 3 Fetoscopy in Cultural Context: Fetal Politics, Reproductive Choice, Religious Experiences, and Maternal Blame 75 4 How to Create a Fetoscopy Collective: Define the Risks and Find Participants 107 5 Fetoscopy and the Single Fetus: Diagnostic Embryofetoscopy, Bladder Obstruction, Amniotic Band Syndrome, and the Technological Fix 137 6 Ligation and Twins: Making and Choosing Twins in High-Risk Pregnancy 157 7 Loss and Success: Social Networks and Constructing an Outcome 187 8 Final Thoughts on Fetoscopy Notes 225 References 237 Index 249
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Series Foreword
We are pleased to present the twenty-second book in the series Basic Bioethics. The series presents innovative works in bioethics to a broad audience and introduces seminal scholarly manuscripts, state-of-the-art reference works, and textbooks. Such broad areas as the philosophy of medicine, advancing genetics and biotechnology, end-of-life care, health and social policy, and the empirical study of biomedical life are engaged. Glenn McGee Arthur Caplan Basic Bioethics Series Editorial Board Tod S. Chambers Susan Dorr Goold Mark Kuczewski Herman Saatkamp
Acknowledgments
This book would not be possible without the tireless efforts of many individuals. I began this project as a graduate student in the Department of Science and Technology Studies (STS) at Rensselaer Polytechnic Institute, and I conclude it as a professor at Rochester Institute of Technology. The ideas and interviews included in this book, have been thirteen years in the making. Starting with coursework examining reproductive technologies, eventually studying at a hospital creating one, and finally teaching undergraduates about such experiences have all led to this work. It is with deep gratitude that I thank all who have assisted me through this process. I would like to thank series editors Glenn McGee and Arthur Caplan. While a postdoctoral researcher at the Center for Bioethics at the University of Pennsylvania, I had the opportunity to meet and learn from both scholars. McGee’s expertise in reproductive technologies and Caplan’s ability to speak across disciplines and to nonacademic audiences demonstrated an admirable scholarship that I hope to emulate. I am honored that they saw my work as worthy of their series. Similarly I would like to thank MIT Press and acquisitions editor Clay Morgan for his unwavering support. I hope that all authors have as kind and responsive an acquisitions editor as him. I would also like to thank senior editor Katherine A. Almeida for her assistance in bringing this work to completion. Beyond MIT Press, I would also like to acknowledge the insightful comments offered by four reviewers who read an earlier version of this book. Although not all their comments were taken up in this work, their time, thoughtfulness, and assistance are greatly appreciated.
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This work developed from my doctoral dissertation, “The SocioCultural Construction of Fetoscopy.” Many faculty members in the Department of Science and Technology Studies at Rensselaer Polytechnic Institute proved invaluable in their tutelage and scholastic demonstration of solid theory and method. In particular, I would like to thank, P. Thomas Carroll, David Ellison, John Schumacher, Andrea Rusnock, David Hess, Langdon Winner, Sal Restivo, and Linda Layne for shaping my graduate studies and teaching me how to search for answers while continually reshaping questions. I would also like to thank the members of my dissertation committee for their efforts to help me refine my project. Thank you to Andrea Rusnock, Sal Restivo, Harry Roy, Lynn Morgan, and Linda Layne. I wish to offer special thanks to Sal Restivo, David Edge, and Linda Layne. As my mentors, they shaped my scholarship and, more important, helped shape my character and integrity. This work would not have been possible without them. In particular, Linda Layne has been my academic advisor, friend, and mentor since we began working together in 1994. Linda, thank you for everything that you have done to shape me into a socially concerned, critical researcher. Your warmth and compassion toward your studies and those with whom you work is a model of ethical, active research. Your thoughtfulness in your work is a model to which I continually aspire. Just as those at Rensselaer need to be thanked for their assistance in this project, so too do my colleagues at Rochester Institute of Technology. In particular, the Department of Science, Technology, and Society/Public Policy has offered time, support, and encouragement as this project drew to a close. I would like to thank those both inside and outside my department who encouraged me along this journey. I offer a special thank you to Thomas Cornell, M. Ann Howard, James Winebrake, Christine Keiner, Murli Sinha, Susan Barnes, Susan Foster, and Andrew Moore. Because of issues of informant confidentiality, I cannot thank publically the many real people who shared their lives with me. I am deeply indebted to the many patient-parents and professionals who entrusted me with their stories. My intent then and now is to present their stories, situations, politics, and beliefs with respect. Although not
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everyone is quoted in this book, I believe that those cited within this text are at some levels representative of the many who do not appear. Even though individuals may not be cited, their stories shape my understandings and are equally important. I wish that all readers of this book could know every one of “my informants” and be as touched by their lives as I have been. Thank you also to the many professionals affiliated with the nonprofit research group with which Martinez worked and at whose invitation I came to the site, and those at Holy Names Hospital for your kindnesses and interest in my work. To be clear, I was guest of the research group who conducted surgery at Holy Names. The project passed Holy Names review, but my access badge was from the nonprofit. Since the nonprofit did not have a physical location, I refer to Holy Names as “the site.” Holy Names administrators were particularly helpful in supporting my stay. It was a joy to work alongside individuals so committed to their work as health care providers. Your openness and willingness to be analyzed is appreciated and a true indicator of your professionalism and belief in the goodness of your work. Three members of Holy Names Hospital must be thanked individually: Marc Martinez, Kay Brown, and Becky Miller. When I first contacted Marc Martinez to discuss my project, he was immediately interested in how fetoscopy could be examined social scientifically. Once I finalized my project, he worked to secure my place at Holy Names Hospital. He sent letters, filed forms, and extended me warm courtesies. His openness and willingness to be investigated critically is a model for interested, caring physicians, and I hope that all social scientists studying the context of medical encounters and the development of medical technologies are fortunate enough to find themselves working alongside such a willing and interested informant. My deepest affection, respect, and thanks to Kay Brown and Becky Miller for all they have done to teach me about fetoscopy, life, and friendship. There are no words to convey the depth of my gratitude, but I hope that the warmth and respect I have for them is clear within this book. As “fetoscopy nurses” they worked to make each patient-parent’s experience as positive as possible. Their commitment to compassionate care is a model of outstanding nursing practices.
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Finally, I would like to thank my friends and family who stood beside me throughout this process. Thanks to my parents, Joan and Richard Blizzard and my in-laws Jim and Mary Ann Messinger. Also, sincere thanks to my twin brother, Doug, and his wife, Kristy Blizzard, and my sister-in-law, Kate Van Buren, and her husband, Bob Van Buren. Thank you also to my friends, many of whom held my hand as I grieved for many of the stories contained within these pages. Thanks to Staycee Sciranka, Sean Carey, Kate and Mike Klussman, Ed Schiff, Beth Abdallah, Mary Beth Kitzel, Susan Brown, Wenda Bauchspies, Jennifer Croissant, and Meredith Dalton. Final thanks are reserved for my husband, partner, best-friend, and confidant, David Messinger. There is no way to thank you for all that you have done for me over the years. Thank you for everything that you have given me, shown me, and taught me. Your love and encouragement make all things possible. This material was based upon work supported by the National Science Foundation under Grant No. 9710783. Any opinions, findings, and conclusions or recommendation expressed in this material are those of the author and do not necessarily reflect the views of the National Science Foundation (NSF).
Looking Within
Prologue
A unique procedure begs an unusual presentation. I hope that this book, and the emotions that run through it, offer you that. My intention is to merge scholarly literatures with the personal hopes and fears of fetoscopy patient-parents and those who care for them, to enhance understanding of the social and cultural (or, sociocultural) context of in utero fetal surgery, or “fetoscopy.” I witnessed my first fetoscopy in spring 1993, less than a year into my graduate program in Science and Technology Studies at Rensselaer Polytechnic Institute in Troy, New York. As a young graduate student interested in medicine, science, and technology, I willingly complied when my professor recommended that I attend a bioethics conference jointly sponsored by the nearby Albany Law School-Union University and Albany Medical College. I headed to the conference unaware that the course of my studies and life were about to change. Although initially excited by the bioethical topics, I grew weary as the day progressed. As presenter after presenter took the stage to discuss issues of privacy, autonomy, and rights, I found myself easily distracted. Though each topic was interesting, the totality of the conference was overwhelming. I wanted to leave early, but knew that I could not. Not only would my professor expect a synopsis of the day, more to the point, I sat in the middle of a lecture row and could not sneak out without causing embarrassing disruptions. I let my mind wander in failing attempts to daydream the remaining afternoon away. It was toward the end of day that I saw a television and VCR wheeled center stage. My curiosity returned. Looking back, I acknowledge the sacred student realization, “A movie!”
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Without much fan-fare, a video began: an in utero fetus appeared on the screen. It was flesh toned and moving. It was alive. I was mesmerized and could not look away. The presenter discussed the technique by which he captured the images, a procedure he called “embryofetoscopy” or “fetoscopy.”1 He explained that the procedure combined tiny needles and endoscopes to reach inside a pregnant woman’s uterus whereupon he could make medical diagnoses on a fetus. As he explained the technique and his hopes for the future, I stared intently at the screen; I was peering inside some woman’s uterus, seeing a fetus that was yet to be born. Questions raced through my mind: Whose was it? Where was it headed? Was it going to live? These questions have not stopped. Following the presentation, I returned, renewed, to my studies and immediately set my energies toward exploring this technique. I read medical journals with zeal and confusion. I became interested in reproductive politics. I became obsessed with scopes and fetuses. I became obsessed with fetoscopy. This book is the outcome of my studies; it is the creation of obsession and fascination. The work is intended to offer glimpses into the sometimes conflicted, often desperate, and always emotional lives of those undergoing and offering fetoscopy. To accomplish this task, I explore the multiple explanations surrounding fetoscopy development and use to understand better the processes through which, and reasons by which, individuals experience and build these powerful procedures, and the corollary, how these procedures affect individuals. My examination highlights the ways in which fetoscopy develops its many, and at times divergent, social and cultural meanings. This book is intended to give readers the opportunity to get to know what it is like to undergo a procedure and what it is like to build the fetoscopy experience. Therefore, it not only discusses the emotional work and experiences of patient-mothers, their companions, and physicians and nurses, but also is the product of my emotional work.2 Within the following pages, I strive to take account of my emotions and those of the individuals who worked with me in researching this topic and becoming involved in the lives of those closest to fetoscopy. My hope is that this book will make a difference in the continued development and delivery of fetoscopy procedures and by so doing will help create medical protocols and improve individual experiences with the techniques.3
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Fetoscopy is little known in nonmedical venues. When I interviewed patient-parents about their experiences and asked why they agreed to be interviewed, a number of respondents explained that they wanted other people (especially potential patients) to be familiar with this newly emergent technology. Many found it difficult to find information on fetoscopy, and as a result struggled through not only learning about their medical ailments, but also learning about the possible medical procedures to treat their conditions. In answer to these interviewees, and as noted earlier, I hope that this book will familiarize the reader with fetoscopy and its current and potential uses. As reproductive politics continue to take center stage in popular culture and U.S. politics, I hope this book will serve as an entry point for a number of readers to examine their own reproductive decisionmaking as well as that of others. I join feminists who challenge readers to rethink or reframe how they envision “choosing” to alter fetal development in utero. There are many explanations for the meanings attributed to altering a pregnancy. As pregnancies and pregnancy decisions become more public, it is important to ask what is happening, to whom, and why. By drawing from examples of fetoscopy decision-making, this book highlights the difficulty of making decisions and living with and through the outcomes. This book joins a growing literature challenging the assumption that feminism is at odds with women who pursue fetal treatments that transgress their own bodies for the sake of the fetus within. As chapter 2 details, this research is ethnographic. From 1997 to 1998, I conducted social scientific research at a small Catholic, women’s hospital, “Holy Names Hospital,” to learn how they created and delivered fetoscopy procedures. I watched surgeries and interviewed those who came in contact with the newly emergent technology. I worked alongside health care providers to understand better the technological, social, and cultural complexities of their techniques. Since that time, I have watched this fetoscopy research team grow from a fledgling group of healthcare providers at a small community-based hospital into a world-renowned program. In May 2005, I returned to the hospital to check on the department’s development. All seemed well.
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The practice had grown, new offices been built, and a large sign outside the hospital included the program as a department. Less than six months after that visit, I received a phone call from the Fetoscopy Research Coordinator, a good friend of mine. Her usually jovial tone was gone as she simply said, “I have something to tell you. Are you sitting down?” My heart raced as I thought of every terrible thing that could befall any one of my friends in the department. I assured her I was sitting down. She continued, “We aren’t doing fetoscopy anymore. The department is closed and the doctor is leaving for another hospital.” I was in shock.4 Though I always knew that fetoscopy was an odd fit at a community-based hospital, it nonetheless fit. For nine years use of fetoscopy at the hospital had grown, and just when it appeared to be taking off, it was gone. Following years of development in a small Catholic women’s hospital, some of the medical professionals associated with fetoscopy, notably Marc Martinez (a world renowned leader in fetoscopy) moved his practice, and thus fetoscopy, to a large research and teaching hospital. Martinez and two other members of the “fetoscopy team” left the familiarity of Holy Names and set off to another hospital—one more familiar with cutting-edge surgery and medical technology development. This change will no doubt affect how fetoscopy is delivered in the future; however, many of the ways in which fetoscopy began to “stabilize” as a medical procedure happened during its development at Holy Names (Bijker, Hughes, and Pinch 1987). The medical procedures and social environments that are fetoscopy will now be recast at this larger university hospital. The intriguing question to be explored over the next decade of fetoscopy development is how much will the university hospital alter fetoscopy delivery and how will fetoscopy delivery (including those who create and undergo it) alter the university hospital? If hospitals have embedded institutional histories, perhaps, fetoscopy does, too. Perhaps the ways in which the fetoscopy team developed the procedures and the social interactions that surrounded and sustained it at Holy Names will, in turn, alter the research hospital in which it will continue to grow. It is likely that many of the patient issues that arise in the communitybased setting will not alter as women now undergo fetoscopy at a large hospital (e.g., experiencing confusion, fear, blame, and guilt); however,
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some aspects of the policies governing patient care will change. What is most important for this analysis, however, is to recognize that during the nine years in which fetoscopy was not in a research hospital, it did develop and it did affect those around it. These effects are part of the history of fetoscopy development and carry with it into this new setting. This unexpected turn of events makes knowing what happened at the community-based hospital even more consequential. It is imperative that this book offer as many inroads as possible to understand the lived experience of these procedures. There are many potential readers: medical staff, ethicists, social scientists, students, and patients, to name a few. Each brings particular questions and assumptions regarding fetoscopy efficacy and reproductive procedures and politics. The format of this book is designed with reader differences in mind. I hope to add to social scientific literature using as little academic jargon as possible to enable medical professionals, pregnant women, and an interested public a chance to get to know a fetoscopy site and to feel some of the hope and despair that is a daily part of fetoscopy care-giver and patient lives. Though the scholarly literatures in which this analysis is based lie at the intersection of science and technology studies, bioethics, and medical anthropology, the manner in which it is written seeks to transgress these fields and professional boundaries. To reach this wide-ranging audience with clearly stated social analytic tools, I break from academic convention and begin this book with a short story. It is not social theory, explicit critique, or interview analysis. Fetoscopy is an emotional experience. It is also exciting, cutting-edge medical technology. It is easy to become lost in the hype of “new frontiers” and “miracle babies” and lose sight of the real lives that are touched by these powerful, life-changing procedures. As I studied fetoscopy, I began to wonder how I might convey the emotion of these events to readers who likely did not know anyone who had undergone a procedure. As I watched and listened, I wondered, what would lead an otherwise healthy woman to consent to surgery? What would lead physicians and nurses to pursue medical technology development with such determination? As I learned more, and this book will show, there were no simple answers. While each patient and experience was unique, one thing remained constant in all fetoscopy cases: fetoscopy was and
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remains emotional work. Each case was at once private and public, intimate and extrinsic. As patients passed through our doors their faces began to blend, but their words and experiences stood out and hit chords with even the most emotionally detached fetoscopy team members. As each day of my study passed I wondered, how will I report this in a way that captures this essence? In an effort to help readers get to know fetoscopy as a real procedure with emotional impacts, the first chapter offers an account of a couple undergoing a surgery, Melinda and Joe. The story is based on an amalgamation of people that I met while conducting this research. The reason for this chapter must be made clear: fetoscopy is a real procedure that affects real people. I do not want this book to use interview material that is easily forgotten as the next words are read or the next woman tells part of her story. To understand fetoscopy, every reader should have the opportunity to “meet” someone who has undergone the procedure and to be with her through her experiences. I hope that you come to know Melinda and Joe, and keep them in mind as you read the remainder of this book. Following this chapter, every quote is offered by individuals who consented to be interviewed about their experiences. To ensure confidentiality, the first chapter is intended to help you feel the investment that those cited within this book have made in their fetoscopic experiences. Following the story of Melinda and Joe, chapter 2, “Why Fetoscopy? Why Now?: Ethnography of a Medical Technology and the Emotions that Fuel It,” details the methodology used in this work and my personal politics that, in part, fueled the study. I outline a history of fetoscopy starting in the 1970s and explore the reasons why fetoscopy never took off as a reproductive procedure until the early 1990s, and even now continues to struggle to find a place in high-risk obstetrical care (perinatology). This chapter marks the beginning of social science critique of fetoscopy and acts as the foundation on which the remainder of the book rests. Chapter 3, “Fetoscopy in Cultural Context: Fetal Politics, Reproductive Choice, Religious Experiences and Maternal Blame and Failure,” follows the questions of why and how fetoscopy emerged and how I came to study it while broadening the discussion of fetoscopy into larger
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social and cultural concerns. I examine the history and current context that makes fetoscopy a viable prenatal procedure in the twenty-first century at a community-based hospital. Further, I explore how fetoscopy and reproductive politics are borne out in Catholic doctrine, and more important, at Holy Names Hospital. I also examine the role of maternal blame and failure in leading pregnant women to consent to fetoscopy. This chapter addresses larger contextual issues that frame fetoscopy use in general (as well as adds individual interview material) to offer a fuller examination of how and why fetoscopy development occurs in some medical establishments and addresses some of the positive and negative effects of its use. Chapter 4, “How to Create a Fetoscopy Collective: Define the Risks and Find Participants,” turns from broad social analysis offered in the previous chapter to investigate the ways in which fetoscopy workers at Holy Names have come to accept or reject the procedure within their hospital. This chapter continues the themes of religion from the previous chapter (how and why fetoscopy develops at Holy Names Hospital) and introduces the notion of “risk” as experienced by pregnant women and those who care for them. I explore how and why Holy Names trains other medical professionals internally and externally (e.g., publications and research) to move fetoscopy from the fringes of medical development and use to become an integral part of hospital practices and ultimately to develop into a world-renowned center for fetal therapy. Chapter 5, “Fetoscopy and the Single Fetus: Diagnostic Embryofetoscopy, Bladder Obstruction, Amniotic Band Syndrome, and the Technological Fix,” is an analysis of the many ways in which fetoscopy is used on singleton pregnancies (one fetus). Although fetoscopy is generally used for twinning gestations, it also offers single fetuses potential treatment options. This chapter presents a general discussion of the possibilities of diagnostic procedures including its potential for genetic therapy, and links it with a discussion of treating unusual singleton conditions (i.e., boutique medicine and orphan conditions). I examine the importance of visualization in some perinatology advances and use two case studies to explore its use: amniotic band syndrome and bladder obstructions. Following these discussions I address the “Achilles’ heel” of fetoscopy: amniotic membrane rupture (Deprest, Lerut, and
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Vandenberghe 1997). Although fetoscopy may embody great hope for otherwise lost pregnancies, until the side effects of its use are better understood and controlled, its potential place in perinatology and continued advancement and proliferation cannot be assured. By examining a variety of ways in which fetoscopy is currently used and ending with its frailty, this chapter highlights the many ways fetoscopy can be used while underscoring that for all the hype and hope for the technique, a seemingly simple, yet medically complex side effect may limit its development. Chapter 6, “Ligation and Twins: Making and Choosing Twins in High-Risk Pregnancy,” introduces the most common use of fetoscopy: to separate identical twins in utero when one fetus increases ailments of the other. Utilizing cases studies of two conditions, twin-to-twin transfusion syndrome and acardiac twinning, I explore the metaphorical doppelganger of one twin feeding off its co-twin to survive (c.f., Strauss 1996). In this chapter, I examine how women and their caregivers come to know these in utero entities and what place religion, culture, and society as well as medical science play in determining who or what a pregnant woman carries inside her and what are acceptable treatment options for these conditions. This chapter continues themes of religion and visualization from previous chapters (e.g., how personhood is created in the context of fetal technologies and visualization) and expands it into discussions of rare twinning conditions. Chapter 7, “Loss and Success: Social Networks and Constructing an Outcome,” examines “what counts” as a success and what it means to suffer a loss. As evidenced in the previous chapters, I argue that all fetoscopy procedures are carried out in, and shaped by, a context of loss. It falls to the individual woman and her social network to find creative, emotional, and at times conflicting narratives to make sense of what seems too often to be a senseless situation. I argue that all losses (of all sorts) are in fact full of meaning and sense; however, it is only in finding a place to speak about such loss, and developing policies to reflect and accept such loss, that fetoscopy patients may ultimately find a sense of relief. Chapter 8, “Final Thoughts on Fetoscopy,” offers a summary of fetoscopy and a look toward the future of these continually developing procedures. Here I address my own political concerns surrounding
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fetoscopy proliferation and my hope that its ultimate use be informed by some of the findings and themes presented in this work. As the first social scientific analysis based solely on fetoscopy development, use, and effect, this book covers a wide range of fetoscopy issues, including its history and the varied uses physicians pursue today as well as some exciting, yet questionable, possible uses for it in the future. Throughout this book, themes such as risky decision-making, moral and religious contexts, as well as individual hope and fear will appear. Each chapter relies on these themes; however, depending on the particular chapter some themes will emerge more clearly than others. Taken together, though, these themes form the sociocultural backdrop on which fetoscopy development and use play out. It ultimately falls to the individuals interacting with fetoscopy to form an environment in which fetoscopy does or does not make sense. This work makes these interactions and environments visible. A Note on the Conditions Fetoscopy can be used on singleton and multiple gestations as a diagnostic and operative procedure. Although each condition will be explained within this book, it is useful to offer a short summary here of the conditions that I will discuss in the remaining chapters. Although relatively few conditions are amenable to fetoscopic diagnosis and therapy, the list continues to grow. Many conditions appear in this book, however, most often cited are the following:5 Bladder Obstruction Approximately 1:5000–8000 male fetuses develop blockages in the urethra. If the blockage is not relieved, severe kidney damage and decreased urination may ensue, leading to low levels of amniotic fluid. Decreased amniotic fluid hinders lung development and may lead to in utero death. With operative fetoscopy, physicians insert a small needle and scope device in utero to identify the blockage and, if possible, fix it. Without treatment, 30 to 50% of the fetuses die shortly before or after birth. Acardiac Twinning An extremely rare condition affecting 1:35,000 pregnancies, acardiac twins are identical twins in which the zygote split
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relatively late in gestation. With this late separation, one twin generally develops “normal” physiology and characteristics while the other twin does not. The acardius lacks or has a rudimentary heart (therefore the name “a”-“cardiac”), and often also lacks a head and/or arms. The result is that the “healthy” twin’s heart acts as a pump for both twins and ultimately expends itself due to the high pumping rate. This problem is compounded by the acardius’ physiology, which tends to bloat with excess blood, while the “pump” twin slowly grows anemic. If left untreated, approximately 50 to 75% of these pregnancies end in the loss of the viable co-twin. With fetoscopic ligation (tying off an umbilical cord) the success rate for a live birth increases to 70 to 80%. Twin-to-Twin Transfusion Syndrome (TTTS) Approximately 6000 fetuses are affected with TTTS per year and 4000 will die.6 Similar to acardiac twinning, TTTS is a rare condition affecting identical twin fetuses in which the fetuses share blood disproportionately. The uneven sharing of blood leads one twin to grow anemic, while the other bloats with excess blood. At the same time the fetus receiving excess blood urinates at a higher frequency, leading to increased amniotic fluid in one amniotic sac (assuming they are in separate sacs; in rare cases they share a sac). The anemic fetus is unable to urinate and its amniotic sac does not fill with amniotic fluid. The low amount of amniotic fluid makes the twin appear to be “stuck” against the uterine wall while the co-twin’s amniotic sac fills at a dangerous rate. TTTS can lead to neurological damage or death of one or both fetuses. Fetoscopy combined with in utero laser surgery, (photocoagulation) of the shared placenta disrupts the blood flow and may separate one fetal circulation from the other.7 With laser surgery, success rates for one live baby is 74 to 80%, with a 4% rate of cerebral palsy (if the co-twin dies in utero). In severe cases in which one fetus is no longer viable, ligation of the dying fetus is an option.8 With ligation, the success rate for one live baby is 90%; however, it remains possible that the survivor may suffer neurological or other impairments. Amniotic Band Syndrome A condition affecting approximately 1:1200 to 1:1500 live births, amniotic band syndrome is still not well understood and competing medical theories exist (Quintero, 2002c). However, a leading argument is that lesions develop in utero and adhere to the
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developing embryo-fetus. These materials wrap around the fetus much like a tourniquet, preventing parts of the fetus from growing. When appendages (e.g., arms, legs, fingers, etc.) are affected by amniotic band syndrome, the constriction may lead to in utero amputations. To treat amniotic band syndrome, physicians identify the band with ultrasound and then use operative fetoscopy to enter the womb and cut the bands, thus freeing the fetus and allowing it to continue growing and developing without the hampering, dangerous bands to constrict it. These statistics should be used as general guides when reading this book. Statistics change over time and with research organizations. The most recent statistics can be found through Internet searches or your health care provider. To extend as much anonymity to my informants as possible, all names, including health care organizations, persented within this book are pseudonyms.
1 Fetoscopy as Lived Experience: A Closer Look
The following short story is a composite sketch of many fetoscopy experiences. The story of Melinda and Joe is not “pure fiction”; it combines facets of many real experiences and is intended to offer a glimpse into the lives of those who create and undergo fetoscopy and to enhance your emotional purchase into a fetoscopy experience. As this book continues, many women’s stories will become fragmented. You will read parts of an experience, but never know a situation in full detail. Although I quote real women, their words reflect only small parts of their larger experiences. It is impossible to tell everyone’s story in detail; in fact, such detail would threaten the women’s anonymity. This short story offers a fuller, more comprehensive description of the fetoscopy experience without threatening individual anonymity. Before you begin to read about fetoscopy and analyze those who create and undergo it, I ask you to imagine the following story: get to know Melinda and Joe as they come to terms (as do all fetoscopy patients) with the fact that their pregnancy is not what they expected and fetoscopy treatment may be their only option to save it. Melinda and Joe Melinda and Joe are a young, upper middle-class couple in their late twenties. Joe is an only child whose family is Presbyterian, though they do not attend church or worship except for Easter and Christmas. Melinda’s mother’s family are practicing Catholics, and her stepfather is Jewish. Her mother left the Church and now attends Temple with her husband on high holidays. Melinda never knew her biological father. Her
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stepfather adopted her and her older sister when they were two and four years old, respectively. Since that time, he has always been “Dad.” Melinda and Joe consider themselves agnostic and sometimes attend religious services when other family members ask the couple to join them. Melinda and Joe attended the same university. Her major was marketing; his, business. They met their sophomore year and were married in a nondenominational, outdoor ceremony shortly after graduation. Three years into their marriage, they bought a house and decided to start a family. After nearly a year of trying to conceive, Melinda thinks she might be pregnant. They purchase a home pregnancy test and decide that they’ll test that weekend. The following Saturday, Melinda follows the instructions on her E.P.T. kit. Together, she and Joe joke that they should be in a commercial, as they slowly watch the picture frame on the stick indicate that she is pregnant. They immediately call friends and family to announce their good news. Monday, Melinda makes an appointment with a local obstetrician to confirm what she already knows. Sure enough, she is “officially” pregnant. The obstetrician instructs her to take prenatal vitamins and watch for any signs of trouble. Melinda schedules her next few appointments and heads home. Her pregnancy continues and she and Joe begin buying baby things and discussing names. Melinda is excited to be a “mom” and finds herself staring at strangers’ children, wondering if her child will look like him, walk like her, cry like him, laugh like her . . . Sometimes she daydreams about the sports her child will play and the piano lessons that he or she will likely hate. She’s due just before Thanksgiving, three days after her father-in-law’s birthday. If they have a son, will he be a namesake? How would her dad react to that? Maybe the baby will be a girl? That would make it easier. The days pass, and she feels that she is getting very big, very fast. When she mentions this to friends and family, they calm her fears and tell her not to worry. Every pregnancy is different, and since this is her first pregnancy, maybe this is how her body responds. It is her sixteenth week, and although she is becoming physically uncomfortable, she looks forward to her upcoming ultrasound. When she and Joe go to the exam she bemoans her large size. Joe smiles and
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puts his arm around her, “You look beautiful,” he says aloud, then quietly whispers, “both of you.” Melinda rolls her eyes and jabs Joe in the ribs. The ultrasound technician pretends not to hear and laughingly asks, “Wouldn’t it be something if there were more than one?” Melinda and Joe laugh. Melinda lies down on the table and the ultrasound technician begins the exam. She puts “blue gunk” on Melinda’s belly and proceeds to run the transducer over her abdomen, looking carefully at the screen. Half the time she looks at Melinda, asking her questions. How old are you? Is this your first pregnancy? Where did you go to school? What do you do? Do you have a name picked out? Do you want to know the sex? She continues searching and the conversation drops off. Her eyes squint as she dutifully makes out detail. She begins typing on the screen. Melinda asks what she is doing. The technician replies with a smile, “Well, I’m just measuring Baby A.” Melinda asks, “What do you mean Baby A?” The technician slowly moves the transducer to the other side of her belly, “Because this is Baby B.” Melinda and Joe search the screen trying to make out the fuzzy appearances. The technician looks at the parents. “You have twins,” she says. Melinda and Joe are stunned. They stare blankly. “No, really,” the technician says, “you have twins.” With that, the technician continues making measurements. Melinda and Joe turn from the screen and stare at each other. Although they don’t speak, the same questions race through their heads: Twins? How did this happen? Is she sure? Is she right? Twins. Joe stammers, “Are you certain? I mean there’s no twins in our family.” Melinda nods in agreement, her body is stiff with shock and she hears the blood rushing in her head. The technician shrugs. “It happens. You definitely have twins. There are two.” The technician tells them that she has to get the obstetrician. The obstetrician comes in and shakes their hands. “I hear there are twins,” she grins as she sits at the ultrasound. Melinda and Joe laugh nervously. “That’s what we hear, too,” Joe replies, still stunned. He reaches for Melinda’s hand and gently strokes her trembling fingertips. The obstetrician takes the transducer and begins to look at the fetuses. Like the technician she, too, types on the screen as she takes fetal
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measurements. She is a tall, quiet woman, wearing a white clinical coat and glasses perched on the end of her nose. Unlike the technician, she doesn’t spend a lot of time talking to either Melinda or Joe. As she continues her examination Melinda and Joe begin to smile. It starts to settle in that they are parents of twins. “What do you think?” Melinda whispers to Joe, her eyes only partly masking her concern and hope. “Well, we wanted a family. Looks like we got one.” Joe’s eyes begin to fill with tears and he quickly wipes them away before the obstetrician notices. Melinda smiles, eyes beaming, she carefully mouths, “softie.” Joe shrugs, smiles and holds her hand even tighter than before. The obstetrician continues her survey. As the minutes pass, an air of concern begins to fill the room. Melinda asks, “Is anything wrong?” The obstetrician continues looking at the screen replying, “With twins, we just like to be certain that things are okay.” She keeps clicking. “You’re in your sixteenth week?” She asks. “Yes” replies Melinda. The obstetrician stops typing, turns from the machine and looks at Melinda. The room is silent. After a moment, the obstetrician explains, “Well, you do have twins. They appear to be identical.” “Identical twins!” Joe repeats. “Yes, they’re identical. At least it appears that way,” says the obstetrician. “But there’s a problem—a potential problem.” Melinda and Joe look at each other. “One fetus, Baby A, is considerably larger than Baby B. You also have a large amount of amniotic fluid. I think it’s possible that you have a condition called twin-to-twin transfusion syndrome.” Melinda and Joe continue to look at each other. The obstetrician continues explaining. “It’s a condition that affects identical twins. It’s rare. What happens is there’s a sharing of blood that’s disproportionate between the fetuses. One bloats with excess blood and one becomes anemic. There’s also an issue of increased amniotic fluid, which could lead to ruptured membranes. There are a number of problems associated with this condition. You’ll want to have it looked at by a specialist. I’m going to refer you to a perinatologist.”
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Melinda and Joe stare at the obstetrician. It’s obvious they don’t know what a perinatologist is or what he or she might do for them. The obstetrician looks at them and says, “High-risk obstetrics. He specializes in high-risk obstetrics.” “High-risk?” Melinda repeats. “Yes,” says the obstetrician, gently touching her arm. “This is a highrisk pregnancy.” Melinda and Joe turn to each other as the obstetrician gets up. “I’ll have my office call his office. We’ll make an appointment as soon as possible. Why don’t you stay here for a few minutes. Let’s see if we can get through to him now. You might be lucky. He might see you this afternoon.” Melinda and Joe sit in the room alone. The faint glow of the ultrasound machine is still iridescent as the door shuts behind the physician. Neither Melinda nor Joe say a word. They sit and wait. About 15 minutes later, the physician returns. “We’re in luck,” she says, “he can see you today at three o’clock. Why don’t you head on over?” The physician gives them the address and Melinda and Joe begin to sit up. She extends her hand to both of them. “Good luck. If you have any concerns, you can always call me, but really, you’ll be better off with him.” Melinda and Joe have a few hours to spend before arriving at the perinatologist’s office. They decide to go for lunch. They stare at uneaten food and begin to wonder what happened. Finally, it’s time to leave and they head to the perinatologist’s office. The car ride is long and silent. Melinda finally murmurs, “I don’t know what I did.” Joe murmurs back, “I don’t think you did anything.” Melinda seems unswayed by his comments and stares out the window. Although she’s lived in this town for most of her life, nothing looks familiar, it’s all shrouded in a confusing haze. They arrive at the perinatologist’s office and are taken to the back room where the ultrasound machine sits besides the bed. Unlike a few hours before when she saw an ultrasound machine and her heart skipped with joy and anticipation, now seeing the machine is painful and she almost doesn’t want it turned on. The reality of the situation continues to grow. What will this physician see?
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She lays down on the bed and Joe sits beside her. She’s told that the perinatologist will be in shortly and she waits. About 20 minutes later, the perinatologist walks through the door. He introduces himself, shakes their hands and turns on the machine. “I understand that you may have twin-to-twin,” he says. Joe looks at him subtly nodding in affirmation. His eyes come to rest on his wife’s naked belly. “That’s what they told us this morning,” Melinda answers. The physician begins to run what appears to be the exact same test as her obstetrician. “Yes,” he says, “you have twin-to-twin. You have a pretty serious case of it, too.” His words fade off as he cocks his head, peering at the screen. He continues looking and measuring. Melinda closes her eyes. She can’t look at the screen and Joe’s head hangs low. The physician continues explaining what he sees. “The one fetus here, Baby A, is quite large. Baby B is smaller. Here’s where the amniotic fluid is disproportionate.” He continues using statistics and numbers while pointing at the screen. It’s a blur at this point. Neither Melinda nor Joe really want to hear any more. He turns off the machine. They look at him. The perinatologist sighs as he reaches for Melinda’s arm, “You need to make some serious decisions, I’m sorry. There are treatment options, and of course there is termination. You can always try again.” Melinda turns to him, “What can be done? Is this treatable? Can we fix this?” After months of trying to conceive and four months of being pregnant, Melinda does not want to terminate. “It’s hard to say if it can be fixed, but there certainly are treatment options,” the physician begins to explain. “Most commonly, people treat this with what we call serial amniocentesis.” Both Melinda and Joe are familiar with amniocentesis, but they’re not certain why it would be serial. “What do you mean?” Joe asks. “Well, one of the problems is the excess amniotic fluid. That’s why your back hurts. That’s why you’re so big right now.” Melinda nods. “What we’ll do is we’ll go in and drain off the fluid as your pregnancy continues. We’ll monitor the fetuses and their development, looking for any signs of distress.” “Okay,” she says, “how often does that happen?”
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“It depends. It may happen once a week. It may happen multiple times a week, and of course the amount of fluid that we draw off depends on how quickly the fetuses make it.” “Isn’t that risky?” Melinda asks. “Well, yes, there’s always a risk associated with amniocentesis.” “What are the other options?” Joe asks. “Well, there’s surgery.” The perinatologist replies. “Surgery!” Melinda exclaims. “Yes, there’s surgery for this. What they’ll do is go in and identify the placenta—because the problem is in the placenta, you see.” He begins to sketch a picture of a placenta on the back of a prescription tablet. He continues, “They’ll make small incisions in your abdomen and enter the uterus. Then they insert lasers through the incisions and apply laser energy to the parts of the placenta where the blood is shared disproportionately. They call it fetoscopy.” As his drawing becomes more elaborate with a uterus, lasers, placenta, and stick figure fetuses, Melinda’s heart sinks. He continues, “In essence, Baby A gets his share, Baby B gets his share, and hopefully, both boys survive. At least that’s the theory.” Melinda’s eyes begin to widen. “Well, that sounds risky, too,” she stammers. She shakes her head in disbelief. The physician’s words slowly repeat in her head. “They’re boys?” she asks. “Yes, you didn’t know?” The perinatologist looks concerned and sorry that he let it slip. “No, we didn’t. It doesn’t matter, I guess.” Melinda’s eyes dart between the perinatologist, Joe, and the ultrasound machine. “Isn’t surgery risky, too?” The physician nods. “Yes, it’s surgery. All surgeries are risky. The other problem is it’s not offered a lot of places. You’ll have to travel. I can’t do it. I can do the serial amniocentesis for you, but I can’t do the surgery.” Melinda and Joe nod. Joe asks, “Well, what are the advantages of the surgery?” “Well again, in theory,” the physician says, “surgery takes care of the problem. If the problem is disproportionate blood flow, it might minimize or stop it.”
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“What are the risks?” Melinda asks. “Of the surgery?” The physician replies. “No, the condition. What are the risks? What could really happen? Do we need to do anything, really?” Melinda’s eyes plead for reassurance; she is desperate to hear good news. “Well,” the physician says, as he touches her arm, “there’s a chance that one fetus will die.” Melinda looks at him, too shocked to cry. He continues, “The problem is, if that one fetus dies, there’s also a chance that it may bleed into the surviving fetus.” “And if that happens?” Melinda asks. “Then they both might die, or the surviving fetus might have a higher rate of neurological impairment. It’s upwards of 25%, or so. Of course, one may die and the other may live and not have problems. It’s difficult to say what will happen, only what could happen. I’m sorry, but this is a tricky condition and we’re still trying to understand it and find ways to treat it.” “Oh God.” She whispers. Tears begin to form in the corners of her eyes. She chokes them back, I need to be strong. I need to listen. I need to think. She repeats to herself. The tears dissipate and hollowness fills her stomach. “And what about surgery?” Joe asks, “What then? What about the death rate? And the neurological issues, what about them?” “Well,” says the physician, “there’s a chance that they’ll die, whether or not you treat them. The main difference that I can see with the surgery is that if one of the fetuses dies in utero, surgery should decrease the potential for neurological impairment of the surviving baby. It comes in closer to 5%, or so.” Melinda turns to the physician, “Well that’s good, isn’t it?” “Well, it depends on what types of risks you want. It depends on what you’re willing to go through. It may even depend on whether or not your insurance is willing to cover it. Another thing to consider, as I mentioned earlier, there aren’t many centers that offer this kind of treatment. You’ll have to travel. The closest center, and the one I’ve referred patients to in the past, is a four-hour flight.” Joe’s eyes light up. “You’ve referred others? What happened?”
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The physician begins to stand. “Well, one couple has two beautiful daughters. And, the other, well . . .” the physician’s tone lowers as do his eyes. After a moment he looks at Joe and simply replies, “they lost the pregnancy. They never made it to surgery. The night before the surgery, they lost it.” The physician continues to get up and head for the door, “Why don’t I let you two discuss this for awhile? Or if you’d like, go home and discuss it. If you decide to have the surgery, I’ll start making calls. If you decide to have serial amniocentesis, we’ll have to set up your first few appointments. Now, I can drain some amniotic fluid today to make you more comfortable, but if you go with surgery, I’d prefer not to and let the surgeon decide what he wants to do.” Melinda turns to Joe. “I want the surgery,” she says, “I don’t want to wait.” Joe turns to the physician, “Is this a very bad case?” The physician nods, “Yes, this looks pretty bad.” “Do you think surgery is the right choice?” Joe asks. The physician hesitates. “I can’t tell you what I think is the right choice for you. You’re the ones who will have to live with the outcome, not me. They’re both options.” Joe and Melinda exchange looks. “Why don’t you call the surgeon,” Joe says. Melinda nods and the perinatologist leaves. About 20 minutes later, the perinatologist returns. “I got through to him,” he says. Melinda is dressed and they’re both sitting in the examination room, waiting to hear what to do next. “I can send your files and he’ll review them. His name is Dr. Marc Martinez.” The perinatologist hands them a piece of paper with a name and phone number. They don’t recognize the area code. “He’s been doing this for a few years now. It’s an in utero process. He’ll go in with scopes and tools and actually laser the vessels in the placenta. You’ll want to start thinking of travel plans. You may want to start making phone calls. You don’t have any children, do you?” Melinda’s face is expressionless, “Just these” she replies, placing her hand on her belly. “That’s good. At least you won’t have to worry about childcare. Anyhow, you’ll want to find somebody to take care of your house.
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Usually people are away for three or four days, but it’s best to prepare for the unexpected. If you have complications, you may need to stay longer. You know, all those things. Reserve your tickets and I’ll start making phone calls on this end for your insurance.” Pointing to the piece of paper, the perinatologist continues, “He wants you to call him. He can discuss your case with you. After you talk to him, you can decide if you want to go through with the surgery. If you do, please let me know. If you don’t, let me know anyway, because we’ll have to find a different option for you.” The perinatologist leaves them and returns to his duties. Melinda and Joe head home. Once home, they call the number that their perinatologist gave them. It’s a pager. They enter their phone number, aware that it’s quite late and the physician will likely return the page in the morning. They hang up and wander around the house, careful not to enter the not yet completed nursery. Five minutes later the phone rings. Melinda answers the phone. “Hello, this is Dr. Martinez, I received a page.” Melinda introduces herself and Joe picks up an extension. Martinez is somewhat familiar with their case following his discussion with their perinatologist and they discuss her pregnancy, the fetuses, and survival rates. They discuss the potential that one might bleed into the other. Like their perinatologist, Dr. Martinez is concerned. He explains that the perinatologist has mailed her ultrasounds and medical records overnight. He will know more the next morning once he has a chance to review the materials. He promises to call them after reviewing their case in detail, and in the meantime faxes them information on the condition and his surgical approach. The next morning Melinda and Joe both call in sick to work and wait for Dr. Martinez’s phone call. The phone rings and Joe answers, he waves wildly at Melinda to pick up the other extension. After exchanging some pleasantries, Martinez explains, “I’m sorry, but this is a bad case. You should be aware of it.” Joe and Melinda continue listening. He explains their case in detail and answers their questions. After hearing his explanations they both agree that they want the laser surgery. There’s a pause on the other end and Martinez says, “Okay, we can do that. But there’s one other thing to keep in mind,” he explains, “It will take you a few days to get here. We can certainly schedule surgery and I’ll have my office
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work on insurance. But one thing you may want to consider, if you get here and one fetus is in terrible, terrible shape, which frankly, one fetus isn’t looking good right now, you may want to consider ligating.” There’s silence on the other end of the phone. Melinda asks, “What do you mean ligating?” “Well, there are two things that I can do—fetoscopically—for you. The first is what we certainly prefer, to laser the vessels. That’s what your physician explained to you.” “Yes.” “The other is to ligate—to tie off the umbilical cord to the fetus that’s about to die in an effort to give the other the full placenta. And also, to potentially protect it from the other fetus bleeding into it.” Melinda and Joe are completely silent. They hadn’t anticipated ligation. They hadn’t even heard of it. “Well,” says Joe, “what about the laser?” “Oh yes,” says Martinez, “That would certainly be the first and preferable method, but it will depend on when you get here and what shape the fetuses are in at that point. We’ll have to monitor the pregnancy and see what the options are once you’re here. But right now, based on what I see, yes, laser is certainly an option.” Melinda and Joe thank him for his time and tell him that they’ll call him back. They hang up the phone and tears begin to flow. Melinda is terrified, as is Joe. They go through the statistics. They think about their options and decide that they want the laser surgery. They call back Dr. Martinez and inform him. He tells them that it is Tuesday and he will try to schedule them for surgery on Thursday or Friday. That should give them time to get to town and go through preadmission testing at the hospital. It should also give them time to check on their insurance. Melinda begins calling airlines. She’s searching for the lowest rate possible, but doesn’t have the time to call every carrier. After contacting the third one she gives up worrying about the price differences and reserves their tickets. They’re slightly more than the first two airlines, but she is tired of explaining her situation to strangers and doesn’t have the energy to call one back and enter another phone tree. Together, Melinda and Joe call their parents and explain their situation. Not long after speaking with their parents, news of their condition
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begins to reach other family members. Each time Melinda hangs up, it seems that another family member is calling to find out what happened. Word is quickly getting out that the pregnancy is in trouble and that Melinda and Joe will be traveling. Each time the phone hits the receiver, it begins ringing again. It’s a brother; it’s a sister; it’s a parent; it’s an in-law. Between phone calls from confused and concerned family, the insurance agent contacts Melinda. She is uncertain as to Melinda’s condition: what is it, who is the patient, and how was it diagnosed? The agent does not know if the surgery will be covered, but she will check into it. When do they plan on leaving? No, her insurance will not cover airline tickets. Melinda hangs up and her sister calls. Two hours later, and following a stream of questions from her sister, the insurance agent calls back wanting more paperwork from the physician. Melinda asks, “Who?” The agent keeps repeating that she needs a letter from Melinda’s doctor. The conversation continues in circles and Melinda grows weary, “Well, is that the physician that I saw yesterday morning? Yesterday afternoon? Or the physician that I talked to a few hours ago?” The insurance agent, also annoyed, again asks, “Which one is your physician?” Melinda stops, thinks for a moment and says, “I don’t know.” She gives the agent Dr. Martinez’s office and pager numbers before hanging up. The phone rings again. And so it continues as they frantically put flights together and arrange for people to visit their house, pick up their mail, water their plants. All while hoping that the insurance company will cover the surgery. The next day, they arrive in the city in which Dr. Martinez is located. It was a long day and they didn’t sleep much the night before. Once in town, they page the doctor to inform him that they’ve arrived at the hotel which, thankfully, offers reduced rates to people traveling for fetal surgery. Dr Martinez explains that he’s at Holy Names Hospital and that they should come directly there for their ultrasound. They arrive for their appointment and are directed back to an ultrasound room. Another damn machine. Melinda looks at it and turns away. At this point, she’s used to laying on the table, pulling up her shirt and pushing down her trousers. The ultrasound technician walks in,
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introduces herself, and says that she works with Dr. Martinez. He’s on his way but she’ll start the exam. Just as before, she turns on the machine and begins taking measurements. She asks them about their flight and family. She continues taking measurements. When the door opens, a middle-aged, medium-build man wearing blue surgical scrubs and a pager walks through the door. He extends his hand, “Hello, I’m Dr. Martinez. You must be Melinda. You must be Joe.” They shake his hand. At least his is a familiar voice, as they had spoken with him so many times. He indicates to the ultrasound technician that he’ll take over the exam. He stares at the screen, moving the transducer from one side of her abdomen to the other. He takes measurements. He shows them the fetuses, their sizes, and conditions. He turns to them as he puts the transducer down. “Well, it’s a serious case as you know.” They both nod. “I think you should think about ligation, but I think laser surgery is also an option at this point.” Melinda and Joe look at each other. “We want the laser surgery,” Melinda says. Dr. Martinez nods. “Then we should do it as soon as possible.” He informs them that they should come back the next day and go through preadmission testing. At that point, they’ll meet his assisting nurse, Kay Brown. Also by that time, they should hear from the insurance agent as to whether or not the surgery will be covered. He asks them if they’ve thought about what they might do if the surgery isn’t covered. Joe nods his head, “Yes,” he says, “we have a new house. We might be able to refinance or take a second mortgage. I called our loan officer yesterday, she’s looking into the options.” The doctor nods, a look of angst crosses his face. This isn’t the first time he’s heard such a reply. “Horrible,” he mutters, “We’ll try what we can with the insurance agent. I’ll talk to them, sometimes that helps.” Melinda thanks him and they leave for the hotel. At 9:00 am the next morning, Melinda and Joe arrive at the hospital to undergo preadmission testing. A nurse takes them back into a small room where she begins to take different measurements on Melinda. Again, like everyone else, she asks, “Is this your first pregnancy? Where are you from? What do you do?” She’s very pleasant, but Melinda is tired of answering the questions. Halfway through the exam, the door
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opens and a woman walks through. She’s tall, older, and wearing blue scrubs. “Hi there,” she says, extending her hand. “I’m Kay Brown. I work with Dr. Martinez. You must be Melinda.” She walks over and shakes Melinda’s hand. It’s obvious that Melinda’s scared. “It’s okay,” says Kay as she puts her arm around her newest patient, “it’s all right to be scared. This should be the most exciting time of your life. You shouldn’t have to be facing this.” Melinda nods in agreement and begins to cry. Kay grabs some tissues on the nurse’s desk and hands them to her, as she gives Melinda a hug. She turns to Joe, “You must be Joe.” He nods. “How are you doing with this?” She asks, “Do you have any questions about the surgery? Can I tell either of you anything more?” Melinda says no as she wipes her face and blows her nose. She thinks she understands, but Kay explains the surgery anyway. She explains that they’ll go in with the laser, identify what they think are the vessels, and laser them in an effort to abate the condition. She hands Melinda a packet of patient materials including explanations of the surgery, informed consents, and information on the hospital and surgery program. As a seasoned fetoscopy nurse, Kay has a very calming way with Melinda and Joe, and they seem a bit more relaxed now that she’s there. They begin to ask about other patients. Have other people been scared? How long have other people had to make their decisions? Kay acknowledges that most people make their decisions quickly. The issue is trying to catch the condition before it gets too bad, “Before we lose the fetuses,” she says. “We don’t like losing babies.” They agree. “Do you want to talk to one of our chaplains or a social worker?” Kay asks. “We’ve got some great chaplains here. Our social workers are very nice, too.” Melinda and Joe indicate that they would rather not talk to anyone else. At least not a chaplain or a social worker. Kay says, “Okay, but just know they’re here, and they’ll be happy to talk to you if you want to talk to them. Have you met Deb?” she asks. Joe looks at her. “Who’s that?” “She’s a social scientist working on her Ph.D. She’s been here for most of the year. She’s studying how this works and who we are, you know,
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kind of anthropologically.” Kay laughs a bit as she waves her hand aimlessly through the air alluding to the variety of questions and activities that have become associated with Deb’s project. “No, we haven’t met her,” Joe replies. “I’ll introduce you,” Kay says. “Do you have any other questions for me?” “No, no other questions.” “All right,” says Kay, “I’ll leave you to finish here, then I’ll see you tomorrow. When you come in for surgery, you’ll come back to this same desk. And if you have any questions at that point, we can answer them then.” “Okay,” replies Melinda. “In the meantime, you take that packet back to the hotel, look it over very carefully, and if you have any questions—any questions at all— either page me this afternoon or write them down and bring them with you.” She hands them her pager number. “Okay,” they agree, and Kay leaves. A short while later, Kay returns with another woman. This woman is younger, maybe in her late twenties, and not wearing scrubs. “This is Deb,” Kay says, “Deb, this is Melinda and Joe. I told them a little bit about you, but why don’t you explain it. In the meantime, I’ll see you two tomorrow.” Kay leaves and Deb introduces herself and her project. She explains that she’s working on an interdisciplinary degree in social science. She interviews patients and their companions, and sometimes observes surgery. She also interviews physicians, social workers—anyone who has a hand in building fetoscopy experiences. She gives them her own packet of information explaining that she would like to interview them about their experience and if they’re willing, to observe Melinda’s surgery. Deb asks them to think about it, and not to feel pressure to consent or not to consent to being involved in her project. She explains that her study is separate from the fetoscopy surgery and that regardless of their choice, she wishes them well. After asking if they have any questions about her work she leaves them for some time to discuss it privately. When she returns, Melinda and Joe sign their consents and both seem intrigued by the prospect of being interviewed and sharing their story.
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Melinda smiles and explains that she’s very willing to be interviewed, especially if she can complain about insurance issues. She still does not know if her surgery will be covered. Deb thanks them and tells them that she’ll be there the next morning. Morning arrives and Melinda and Joe return to the hospital. Kay and Deb meet them in a back room to discuss Melinda’s surgery. Deb leaves and Kay continues to sit with them, making certain that they have all their medical questions answered. When they’re called into the preoperative area, Melinda leaves and Joe stays behind. Melinda is instructed to put on a surgical gown. It is flimsy and she’s not certain which is the front and which is the back. After adjusting it in different ways in hopes of trying to cover most of her body, she makes her way to the gurney that’s been set aside for her. She lays down on the gurney and soon preoperative nurses surround her, asking her a variety of medical questions and then asking them again. Joe is called to the back room and stands at the side of the gurney. One by one, people from the fetoscopy team come back to meet Melinda. They ask her the same set of questions, and she answers them. A little while later, another woman in scrubs comes to meet Melinda. She introduces herself as the nurse anesthetist who will be taking care of her. She has a pleasant face, is middle-aged, and has a distinct accent that Melinda cannot place. She speaks in soothing, almost motherly tones. “Don’t worry, honey, I’m the one who’s going to take care of you,” says the nurse. “I’ll be right there through the whole thing from when you go to sleep to when you wake up, I’ll be right there. Have you ever had general anesthesia before?” she asks. Melinda says no and confides that she still has her tonsils. She had her wisdom teeth pulled, but they used Novocain. “Well, do you have any concerns about anesthesia?” the nurse asks Melinda. Melinda replies, “Well, yes, I’m scared. I’ve never had it. I will wake up, right?” The nurse smiles. As she begins to reassure Melinda, Joe speaks up. “What about this thing about people feeling pain during surgery? I saw it on the news a few months ago. Will she feel anything?”
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The anesthetist shakes her head and makes a face of disgust. “They just scare people. It’s awful,” she says. “Well,” says Joe, “it scares me.” The nurse anesthetist nods. “Those are very rare cases. But, in fact, yes it does happen that people have bad experiences and some people do die or suffer effects from anesthesia, or surgery in general. But like I said, that’s a very rare situation. The chances of it happening to you are very small. I’ve never had anyone tell me that they’ve felt or remembered anything. But there are risks with surgery—to both you and the babies. You need to remember that. There are risks, here.” They continue talking and discussing the risks of surgery and anesthesia. Melinda thanks her for taking her concerns seriously and tells her that she doesn’t have any more questions. After asking her the same questions that everyone else has asked, the anesthetist rubs Melinda’s arm, grins widely and says, “Well, I’ll see you in surgery.” She shakes Joe’s hand and leaves. Throughout the morning, people come back to see Melinda. Kay comes to make certain that Melinda is comfortable. Dr. Martinez comes and makes certain that the informed consents are filed and to answer any lingering questions about the procedure, their goals, and its risks. Later in the morning, Deb appears around the corner of the screen. She looks different now that she’s wearing blue scrubs and seems to look more like the medical team than the person they met the day before. Deb walks up and touches Melinda’s arm. A faint smile is all she can offer and a soft, “hi, Melinda.” Melinda smiles a bit, “Look at you,” she quips. Everybody looks the same in the blue scrubs, almost like a uniform. “Yes, very stylish, don’t you think?” Deb replies. “Well it’s more than they gave me,” says Melinda, looking down at her surgical gown. Deb nods in agreement while continuing, “I just wanted to check in and wish you well and ask if there’s anything that I can do for you.” Melinda replies, “No, no. There’s nothing. I’m just waiting to be taken back.” Deb turns to Joe who shrugs and nervously laughs, “Pray?” His pained eyes betray his forced laugh.
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“Pray?” Deb asks, a bit surprised, but moved by the honest request. She responds quietly, “Okay, I can do that.” They both look at her as she continues, “I can, if it would help. If you want me to, I will.” They both look at her and kind of nod. “It can’t hurt,” Melinda says as she quietly rocks Joe’s hand in her own. “No, I imagine not,” Deb replies, “after all, I’ll just be there with a notebook, taking notes. I don’t handle any tools. I can do that much for you.” Joe seems relieved. Melinda seems less concerned, but thanks Deb just the same. “Okay, is there anything you would like me to say in particular?” Deb asks, not knowing their religion or spirituality. “No, I don’t think so . . .” Melinda responds while turning to Joe, “I don’t know any prayers, really.” Joe nods in agreement, then adds, “Just ask God for help.” “Okay. I’ll just say a quick something right before they start, how about that?” They both thank her and she leaves. More people continue visiting with her, asking if there’s anything they can do to help her. Finally, Kay shows again. She asks Melinda how she’s doing. They’re nearly ready in surgery. Melinda says she’s okay, but then looks off in the distance. Leaning down toward the gurney Kay gently asks her, “What’s the matter? What is it? Is there anything that we can do?” “It’s just,” she says beginning to choke up, “It’s just, I mean, I’m going to go to sleep and when I wake up, my babies might be dead.” Joe’s head drops, while tears begin to roll down Melinda’s face. Turning away, Joe silently wipes his eyes. Reaching through dangling wires and flashing monitors, Kay gives her a hug explaining, “We’ll do everything we can to make certain that doesn’t happen,” then she pauses and continues, “but it might.” Melinda nods, “I know.” At that point, the nurse anesthetist arrives, indicating that they’re ready in surgery. “Are you ready?” asks Kay. “Yes” says Melinda. Joe nods as well. He kisses his wife; they take her away. Melinda watches the ceiling whirl by as they wheel her to the operating room. Fluorescent lights pass in a dizzying effect. Then, as suddenly
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as it started, the gurney begins to slow. She knows she is coming nearer the operating room. She begins to see people, their faces are obscured by surgical caps and masks, but at least some of the eyes seem somewhat familiar. “Remember me?” asks one set of eyes, “I’m Christine, I did your ultrasound yesterday. I’ll be doing it today, too,” she says as she reaches out to touch Melinda’s arm. The gurney makes a tight turn and Melinda is in the operating room. At this point she wonders how far she’s gone and where Joe might be. They transfer her onto the surgical bed. There, she sees the nurse anesthetist who begins to brush Melinda’s hair away from her forehead. “Hi there, sweetie pie,” she says, “everything’s going to be fine. I’m just going to get some medications going.” The nurse anesthetist nods to Kay who heads out into the hallway, asking if anyone has seen Dr. Martinez. He’s standing in the hall, discussing the case with some of the nurses. He’s outlining his approach by doodling on empty supply cartons. “We’re ready,” she says. “Good.” He walks into the surgery and stands beside Melinda. “How are you?” he asks. “Fine,” she says. He rubs her shoulder closest to him and begins to hum. “You’ve met everyone?” he asks. “Yes, I think so.” “Good. Well, if you’re ready, we’ll go ahead and put you to sleep. Then we’ll start surgery.” Melinda says that she’s ready and Dr. Martinez continues to stand there, rubbing her shoulder and humming a song that Melinda vaguely recognizes. The nurse anesthetist slowly begins to put medications into the IV and Melinda drifts off to sleep. The doctor returns to the hall. He begins the process of scrubbing, as do the nurses, the ultrasound technician, and his assisting physician. Meanwhile, the nurses left in the operating room begin to remove the sheets that cover Melinda. They clean her abdomen and drape her with blue surgical cloths. Once she is ready, Dr. Martinez and the rest of the team enter the room. To one side of Melinda’s body stands the doctor and a nurse who
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will hand him tools. On the other side is an assisting physician, one of the doctor’s partners, and the technician who will run the ultrasound throughout the surgery. Also in the room is a nurse running “the tower,” a complicated, mass of machines through which she can switch between fetoscopy video and ultrasound images. Others in the room include Deb, who’s standing in the back corner, another nurse who will work the laser machine, and a final nurse, the circulator, Kay, who will troubleshoot the case if anyone needs help. The room is small and compact, but not uncomfortably tight. Surgery begins. Dr. Martinez has the lights dimmed. The only lights remaining are those emanating off the machines and handheld flashlights. He makes a small incision in Melinda’s abdomen and pushes in the trocar, a small funnel-like instrument. He does this through ultrasound guidance, careful not to rupture any amniotic membranes. Watching for bleeding, he then inserts the tools, through the trocar. Once the scope is inside, he looks around and sees the placenta. He slowly begins the process of identifying the different parts of the placenta, trying to see which vessels he will need to separate. After identifying them, he asks the nurse operating the laser to start the machine. He inserts the laser and gently applies energy to the vessels, theoretically separating the blood flows. Once he has lasered the placenta in the areas that he thinks are necessary, and the assisting physician agrees that they have accomplished their goal, they begin to remove the tools from the uterus. At that point, a fetal hand is cast into view. A nurse cries out, “Oh that one! Take that shot! Take that picture for the parents!” The doctor complies and dutifully pushes the button on the camera to take a still photo of a fetal hand. “Okay,” he says, “we’re outta here on three. One—two—three.” On the third count, he swiftly removes the trocar and watches for bleeding on the ultrasound. There doesn’t appear to be any. The trocar came out just as swiftly as it went in. The membranes seem to seal behind it. It was a successful case, technically. “What was the time?” the doctor asks as he steps away from the gurney and Melinda. “Two hours and twenty minutes,” replies one of the nurses as she continues to take down information on her clipboard.
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“Good, good . . .” he responds as he begins to remove his surgical gloves. He leaves to find Joe and explain the case. When he enters the waiting room, the nervous father immediately stands. He tries in vain to read the doctor’s face, but it offers little insight. As the doctor walks to Joe, he extends his hand and says, “Well, mom’s okay and the babies are okay.” Joe sighs, shakes his hand, and a smile begins to appear. The doctor motions toward two empty chairs and they sit. He explains the case in detail and Joe nods his understandings. “But,” he continues, “You need to remember that your babies are very sick. I’ve done what I can— but you’re not out of the woods. We’ll have to watch the pregnancy and see how the babies respond, okay?” Joe replies, “Okay, I understand. Cautious optimism, huh?” Dr. Martinez laughs and begins to stand. In response, Joe stands. “Yes, cautious optimism” the doctor repeats as he shakes Joe’s hand and pats his shoulder. “Recovery will call you when she wakes up. I’m going to check on her now.” He leaves and Joe sits down. Back in the operating room, the remaining nurses remove Melinda’s drape and wash her abdomen and put Band-Aids over the insertion points. The nurse anesthetist slowly begins to rouse Melinda. Rubbing her cheeks, she repeats, “Wake up, honey. Wake up. Surgery’s over. The babies are fine. Wake up, wake up.” Melinda begins to awaken as a transport gurney arrives. Kay, the nurse anesthetist, and the recovery room nurse wheel Melinda down the hallway as she lays back, groggily watching the same fluorescent lights that she had seen only hours before. Her throat is sore from being intubated, but she closes her eyes when she hears that everything is fine. She feels nauseous. Very nauseous. A recovery room nurse straps a fetal monitor on Melinda and verifies that there are two fetal heartbeats, but one is weak. Kay comes around to Melinda’s side, rubs her shoulder and tells her that her surgery’s over, repeating the same words that the nurse anesthetist did. “We’ve got two heartbeats,” she whispers, “you rest, soon we’ll bring back Joe.” “Sick . . .” Melinda whispers. “You feel sick?” Kay responds, lowering her face so that it’s inches away from Melinda’s half-opened eyes.
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“Throw up . . .” Melinda continues to choke out mumbled warnings that she may vomit. Kay steps away to let the nurse anesthetist talk to Melinda. “Hi, sweetie,” she says, as she gently caresses Melinda’s pale and slightly contorted face. After years of rousing patients, she finds that nothing is more soothing than human touch. She continues to softly push Melinda’s hair back. Melinda is clearly suffering the effects of the drugs used to control her ensuing contractions. She had been warned that contractions might follow the surgery but that they were generally easily combated with proper medication. But this medication—this was too much. Melinda was not prepared. “. . . going to be . . . sick . . .” Melinda repeats. “It’s okay. You’re okay. These are the drugs to help you keep the babies. We’ll take you off of them as soon as it’s safe.” “Throw up . . .” she repeats. Kay hands the nurse anesthetist a pan, should Melinda begin vomiting. The nurse anesthetist continues to soothe Melinda by promising her that she’ll take care of her. “It’s okay, there’s nothing there to vomit. You may have dry heaves, but you won’t choke. I won’t let that happen to you. You’ll feel like you have the flu until we can get you off these drugs, okay? Try and get through it, sweetie. I know it’s awful.” The nurse anesthetist continues stroking Melinda’s hair while Kay begins to rub her lower legs—anything to assure her that she’s not alone. Melinda closes her eyes. She has never felt this sick. The nurses fade to the background as Melinda concentrates on her babies. She groggily vacillates between fearing for her babies’ health and her own. Dr. Martinez returns to Melinda. She still feels sick, but is aware of her surroundings. She nods and mumbles responses. Like the nurse anesthetist and Kay, he assures her that there are two heartbeats, for the moment. He describes the surgery and explains that he’s still worried because the fetuses are in bad shape. Joe knows that she’s in recovery and when she awakens more, he’ll be brought back. After that, they’ll take her to labor and delivery and continue to control the contractions. Melinda whispers a thank you and the doctor soothingly rubs her arm. Unable to accept the thanks of a desperate mother he
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simply smiles his acknowledgment and responds, “I’ll check on you later.” He leaves. Eventually, Joe arrives and he and Melinda are transferred to labor and delivery. All night long, Melinda is given drugs to keep her contractions under control. She’s absolutely miserable and terribly thirsty. Joe sits back in a recliner and worries. Occasionally he wipes the hair from her face and runs an ice cube over her lips. His thoughts flash back to his grandmother’s battle with cancer and ineffective chemotherapy. The nurses check on her and Dr. Martinez returns quite late at night to check on her as well. The following morning her contractions have subsided and they take her off of the drugs. She is transferred to high-risk obstetrics where she finally stomachs some food. Kay returns to check in on her. This is the third time they’ve seen her since the surgery. “Don’t you have other patients?” Melinda jokes as the presence of Kay is consoling. Joe also finds comfort in her visits. “Oh yes, that.” Smiles Kay. “Of course, but I like to take extra special care of my extra special babies.” She checks Melinda’s vital signs and sits beside the bed, where the three of them discuss the surgery and their hopes for the future. After a half an hour of visiting Kay admits that she has to get back to work before she is missed. She leaves but promises to return before her shift is over. After Kay’s visit, Melinda continues lying in bed. An hour later, Dr. Martinez arrives to run a “bedside” sonogram. The sonogram is wheeled into the room and he watches the pregnancy. He shakes his head a bit and gives them the bad news. Unfortunately, it doesn’t look like the surgery helped much. The one is still in bad shape and doesn’t seem to be getting better. The other is holding his own. He tells them that he’ll continue to watch them throughout the day and look for possible signs of change. He lists the different signs that the pregnancy is improving and assures Melinda that they’ll watch for them. Melinda and Joe wait. Throughout the day, sonograms are ordered and they watch. The following morning, they run another sonogram. The doctor tells them that one fetus is quite ill and likely will not survive. They should
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consider ligating. He speaks with Joe and Melinda about the procedure and leaves them to decide. It’s a long morning. Melinda immediately wants to ligate. Joe is hesitant. He can’t understand her reaction and asks her how it is that she could kill their baby? Why would she want to kill him after all that they’ve been through? Melinda looks at him and explains that she’s not killing a baby, she’s saving a baby. They continue to debate, knowing that time is ticking away. If they want to ligate, they’re going to have to decide soon. Neither one of them is happy with the choices offered and the prospect of making a decision is very, very painful. It’s clear that they can’t agree. “If we ligate,” Joe asks “What then? What are we supposed to tell his brother when he gets older? How are we supposed to tell him what we did?” Melinda shakes her head. “It’s not that we’ve done something. It’s that we can’t do anything else.” Joe looks down. “How do you think he’ll react to that? Knowing that Mom and Dad, you know, tied off his brother?” Melinda looks down at her stomach. “I think it depends on how we tell him. Maybe it depends on if we tell him.” Joe looks at her. “What do you mean, if we tell him?” “Well, maybe we’re not supposed to have twins? I mean we only planned on one, and maybe I’m only supposed to have one?” Melinda looks at Joe, she’s confused and straining to make sense of the situation. Joe shakes his head. “You mean, he’d be the only person in the family not to know that he had a brother?” Joe sighs and shakes his head, “No, we can’t do that.” Melinda continues, “I’m not worried about him blaming us, I guess. I’m more worried that . . .” she stops in mid-sentence, staring out the window. “What?” asks Joe. “What’s worse than blaming us?” “I’m worried that he’ll blame himself.” “What?” he asks. “I’m just worried that he’ll think that he stole his brother’s blood, his food, his air . . . that he killed his brother. I couldn’t bear that. I’d rather he think that we killed his brother than he did.”
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Joe shakes his head. “I don’t want anybody to kill anybody. I just want my babies.” Melinda begins to cry. “Don’t you think that’s what I want, too?” They continue to discuss what death means, what killing means, when life begins, when life doesn’t begin, how life should end, how life has to end. For hours, they talk, cry, and debate. They ask to see the chaplain and they ask to see social workers. They debate calling their parents and decide not to call. The decision’s too hard for them, let alone their parents. Later that afternoon, Joe and Melinda decide to ligate. Comparing their decision to turning off life support to a dying family member, they tell Dr. Martinez that they want the ligation as soon as possible. The doctor explains that they’ll have to convene an ethics committee meeting in which he’ll explain the case. He assures them that this is nothing new. All ligation cases must be reviewed before the committee, but he feels this is a clear-cut case and ligation is medically warranted. Nevertheless, there is always the potential that the committee may reject it. They’ll know the next morning. The following day the ethics committee meets and Dr. Martinez explains the case to a small group gathered around a table. He answers their questions and by the end of the meeting, they are in agreement. Ligation is warranted. He goes upstairs to tell Melinda and Joe that their case was accepted. It passed. They can do the ligation, if they still want it. Joe and Melinda agree that yes, they still want it, but Melinda is a bit hesitant. “What’s going to happen?” she asks. The doctor looks at her. “Well, we’ll take you back to surgery just like before—” he begins to explain the surgery. “No,” she says, “what’s going to happen to my baby? What’s going to happen to the dead baby?” He explains that without blood and nutrition, it will begin to emaciate. It won’t hurt the surviving baby, but it will remain inside. Melinda looks panicked and somewhat horrified. “You mean the dead baby’s going to be with the living baby for the rest of the pregnancy?” “Yes.” “Inside me?”
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“Yes, it will remain in utero.” “And when I give birth? What then?” Melinda asks, her eyes widening. “You’ll give birth to both,” Dr. Martinez says. “And what do I do with the dead baby?” She asks. “Well,” he explains, “you can cremate it, you can bury it. You can do any number of things. You can see it. You don’t have to see it. You’ll want to work that out with the department of social services at your delivery hospital.” Melinda agrees. As she signs the papers consenting to ligation she mumbles, “I’ll be a walking graveyard.” Joe reaches for his wife and the doctor stands silently. Later that afternoon she is taken back to surgery and the same processes ensue, only this time she knows that she’ll go in with two heartbeats and leave with one. She’s wheeled down the corridor and the fluorescent lights pass by. She’s taken in and as before, the lights are dimmed and surgery begins. This time, however, the placenta isn’t the object that the doctor searches for, but the umbilical cord leading to the dying fetus. With miniaturized sutures, he ties it off and everybody in the room waits to make certain that the blood flow ceases. A few minutes pass. It is dead. At the end of the surgery, Dr. Martinez again counts to three and removes his scopes and trocar, announcing “We’re outta here.” He steps away from the table and tells the rest of the team that he’s going to talk to Joe. The nurse anesthetist begins to rouse Melinda. Like before, she rubs her face and her shoulders. She removes the intubation and careful not to mention the babies, she gently whispers, “Wake up, sweetie pie. Wake up, honey. Melinda, case is over. Everything’s fine.” The following two days are similar to the first days when they arrived and underwent laser surgery. She’s taken to recovery and labor and delivery. Again, she suffers through the powerful drugs to control her contractions. Ultimately, she returns to the high-risk obstetrics floor to be monitored. Here they run ultrasound exams throughout the day to make certain that the surviving fetus remains a surviving fetus. The ultrasounds are painful to watch as Melinda sees her one live baby, and occasionally catches glimpses of the other. The dead baby doesn’t move. She finds
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watching the ultrasound too painful and can’t watch them any longer. She hopes within a few days or possibly weeks, to return to watching them, but it will take time. The next day, Dr. Martinez tells them that the case looks good, that the fetus looks fine. They can return home under the care of their other perinatologist, who will see them through the end of their pregnancy. They thank him for his efforts and he leaves the room. Throughout the day, nurses come in and offer condolences for the decisions they had to make, and best wishes for the future that lies ahead. Deb comes in and interviews them. They explain the pain of making their decisions. They explain their fears and hopes. Like other interviews, this one is at once painful and hopeful. The three of them sit around the room talking about the case and the decisions. They still don’t know what they may or may not tell their baby. They’re filled with many questions. They don’t know what they’ll do with their dead baby. They think they may cremate him and take his ashes home. But they also want to be able to “move on” as Melinda explains. Maybe she won’t take the ashes home. They’re not certain, but they have time to make that decision. They’ll probably talk to their parents. Deb wishes them the best for their pregnancy, and as with the nurses, offers her condolences for the son that they lost. They thank her. She asks when they’re leaving and they tell her later that night. They have a flight booked and are looking forward to going home and being in familiar surroundings. Later in the day, they are released from the hospital and many of the people who cared for them come by to say good-bye. They exchange emails with Kay and phone numbers. They promise that they’ll let her know when the baby arrives. After seven days, two surgeries, and the death of a son, they leave and head home. While home, they continue monitoring their pregnancy with multiple ultrasounds and visits to the perinatologist. As they prepare to make room for a new baby, they also prepare to make room for a dead baby. They speak with mortuaries and decide what they want done with their dead baby. They opt for cremation and will bring the ashes home. Hopefully, they’ll spread them somewhere, maybe by a tree, but not until they know where they’re going to eventually settle. They’re not convinced that
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they’re going to stay in this town forever and they don’t want to leave their dead baby behind. Friends say they sound morbid discussing these things, but they shrug. What else can they do? A month or so before her due date, Melinda goes into labor. She’s taken to a local hospital where she delivers both babies vaginally. One is pink and crying. He’s small, but very much alive. The other is smaller, still babylike, somewhat emaciated, and a deep purple. She holds both. She names both. One is taken to the nursery; the other to the morgue.
2 Why Fetoscopy? Why Now?: An Ethnography of a Medical Technology and the Emotions That Fuel It
Since the latter half of the twentieth century, and carrying into the twenty-first century, some physicians and research teams have sought prenatal treatments and diagnostics for a handful of potentially lethal fetal conditions in an effort to save an otherwise nonviable fetus. These surgeons and their patients live on the “new frontier” of reproductive medicine in which emergent technologies lie at the intersections of life and death, hope and despair (for criticism of “frontier” rhetoric, e.g., see Casper 1997). Fetoscopy is one of these procedures. A variety of subtle differences separate the ways in which fetoscopists use the procedure; therefore, fetoscopy is best considered a general term describing a number of similar procedures in which an endoscope is placed in utero, allowing physicians to view inside a pregnant woman’s uterus.1 Often the endoscope, or fetoscope, is combined with a sampling mechanism or miniature surgical tools to enable prenatal diagnoses and possible therapeutics (e.g., Quintero 2002a, Reece et al. 1997, Dearest, Lerut, and Vandenberghe 1997). As an informational gathering tool, and possible vehicle for fetal treatment, fetoscopy is a powerful medical procedure. However, compared to other forms of prenatal procedures such as ultrasound and amniocentesis, fetoscopy is quite rare and, not surprisingly, little-known in popular culture. It is the general lack of knowledge of fetoscopic procedures among potential patients, combined with its powerful potential uses, that makes a social analysis of fetoscopy timely. Although contemporary fetoscopy delivery is sparse and its use limited, for those who develop and undergo it, its effects are wide ranging and life altering. An analysis highlighting the experiences of those closest to it, the patients and their caregivers, is warranted.
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The path bringing fetoscopy to modern-day medicine has not been smooth. It is impossible to appreciate contemporary fetoscopy without understanding the potentials and limits of its predecessor, “classic fetoscopy” (Quintero, Puder, et al. 1993). Although classic fetoscopy first appeared in the 1970s, it was comparatively cumbersome and a relatively large tool led to increased pregnancy disruptions. Simply put, in many cases the medical risks of using classic fetoscopy outweighed the medical risks of not using it. Though some physicians remained hopeful that fetoscopy would eventually prove useful for a variety of diagnoses, in general the technique was replaced by the less invasive and improving ultrasound technologies (e.g., Hobbins 2002). Although ultrasound usurped fetoscopy as the premier visualizing technology for obstetricians and gynecologists, classic fetoscopy did not disappear from medical practice or development. A few conditions still needed the accuracy of a clear in utero, visual diagnosis. Fetoscopy did not vanish from medical practice, but it became a relatively obscure procedure offered by a limited number of physicians for only a handful of rare conditions. In his review of endoscopy in obstetrics, fetoscopy pioneer, John Hobbins, explains that fetoscopy has historically waxed and waned as other technologies developed. Less invasive technologies overtake fetoscopy (e.g., ultrasound), only to have fetoscopy reemerge as a procedure capable of treating or diagnosing other medical conditions. As the 1990s unfolded, some physicians realized that advances in endoscopic technologies in other areas of medicine (e.g., cardiac surgery) could be harnessed for new fetoscopic procedures. The combined advantages of high-resolution visualization technologies with miniaturized surgical tools and small diameter sampling needles laid the technological foundation and struck the medical imagination leading to this new fetoscopy. Now physicians could enter the womb with less risk of pregnancy disruption and see the fetus more clearly. The future of fetoscopy, once again, seemed assured. With time, use of fetoscopy emerged in two fashions: operative fetoscopy and diagnostic fetoscopy (sometimes termed, embryofetoscopy). Both approaches share the dual advantage of being medically minimally invasive while allowing physicians to view an in utero region.
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They differ in the period during which access occurs (i.e., early or later in gestation), length of incision for the endoscope to enter the uterus, and the ability to alter or fix the underlying medical condition (e.g., Quintero 2002a). Although some laud the ability of fetoscopy to aid in the diagnosis or treatment of troubled pregnancies, others are apprehensive and feel that it can be misused, inviting people to “play God” by deciding who and what is fit to live. While some physicians and patients embrace the procedures for their life-saving attributes, they also carry potential physiological and psychological risk. Taken together, diagnostic and operative fetoscopy offer some women a chance to alter their pregnancies; at the same time, these medical procedures also place these women in difficult moral and cultural terrain as they must make difficult decisions regarding their pregnancies. Diagnostic embryofetoscopy is generally performed in the first trimester of pregnancy with physicians either using scopes only or adapted “needles” that hold tiny endoscopes. Diagnostic procedures allow physicians to diagnose visually conditions for which other prenatal techniques, including amniocentesis and ultrasound, are ill-equipped.2 These procedures are touted for their ability to view the in utero region, and they may also have the ability to draw samples from the womb (Reece et al. 1997). Though many medical questions remain unanswered, in theory early access to fetal circulation through diagnostic embryofetoscopy could lead to genetic therapy of the developing fetus. As E. Albert Reece, a leading expert in diagnostic embryofetoscopy, explains: Up until recently, our ability to attempt curative therapy for certain conditions and genetic disorders was precluded by our inability to access the fetus. Needle embryofetoscopy can now permit us access to the fetus very early in gestation at a time when the fetus is immunologically naïve, thus paving the way for firsttrimester interventions. (Reece 2002:21)
Currently, some forms of diagnostic (or needle) embryofetoscopy are used to sample blood from the embryo or fetus; it is not far-fetched to envision a similar procedure that might deliver medications or therapies to the human embryo or fetus. Although bioethicists and others disagree over the presumed appropriateness of such therapy, it is possible that advances in diagnostic embryofetoscopy may prove the catalyst and vehicle for future genetic therapy.
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A technological cousin to diagnostic embryofetoscopy, operative fetoscopy, is performed during midgestation using tiny abdominal incisions through which physicians pass endoscopes and other items necessary for surgery (e.g., Quintero 2002a).3 Once inside, physicians can see the fetus or placenta and attempt surgery to alleviate and minimize medical conditions. Unlike the highly invasive open surgical technique (popularized in the 1980s) in which a caesarian-like incision allows physicians to remove a fetus (or parts of it) from the womb for surgery, operative fetoscopy involves no long incision and no part of the fetus is removed from the womb.4 The fetus remains in utero throughout a procedure. Unlike a diagnostic approach, operative procedures are considerably longer, ranging from 2 to 3 hours, and may be performed under general or local anesthesia. Only a few conditions are amenable to operative fetoscopy; however, the list continues to grow, as does the number of medical centers offering it as treatment for high-risk pregnancies (for current uses of minimal access techniques and the technologies utilized during surgery see, e.g., Sydorak and Albanese 2003). A Word on Words Before further discussion of fetoscopy and its social and cultural effects, it is necessary to address the difficulties of writing about fetoscopy and fetal politics. All facets of an individual’s identity assume social roles and responsibilities shorn up with cultural narratives and political contexts. As illustrated within abortion debates, pregnancy invites, suggests, proves, and disproves a variety of prenatal definitions and assumptions. Reflecting philosophical variations and ideological differences, individuals use specific terms in an effort to press forward their personal beliefs regarding the meaning of the unborn. For example, a pro-life individual may refer to an in utero entity as “baby” quite early in gestation, whereas another individual may wait until significantly later or postbirth to use the term “baby.” Referring to the in utero as a baby is a philosophical, moral, and political decision granting special attention, and possibly rights, to the unborn. Referring to the in utero fetus in the same fashion that one refers to an already born baby leads to a slippery slope when
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the rights accorded a born baby may also be given to the unborn as though the two entities were no different. Yet, the already born and unborn are quite different. The unborn is completely dependent on the body of the woman who carries it. The already born, while still dependent on others, does not rely on a particular host body. Many Western individuals and legal precedents would argue that the already born is a person with legal rights. It is less clear what, if any, rights the unborn should be accorded, particularly when its presumed rights may conflict with those of the woman who carries it. In their efforts to study reproductive experiences and present them in ways that do not lose focus on the pregnant woman for the more elusive fetal patient, most feminist scholars support the biomedical distinction between “fetus” and “baby” in their efforts to theorize pregnancy without threatening women’s reproductive rights. Recent arguments, however, have shown that such positions fail to address the diverse contexts of reproductive experiences (Morgan & Michaels 1999). I join these later contributions that critically explore fetal subjectivity within feminist politics and, like many of these scholars, as a pro-choice social scientist I am constrained by the “Feminist Problem of the Fetus,” which makes it difficult for scholars to examine the fetus as a subjective entity (e.g., something that may have cultural, human, or personal identity) without potentially supporting or entrenching arguments of fetal rights (Michaels 1999:113). The Feminist Problem of the Fetus is distinctive in that it not only affects individuals, but also entrenches social assumptions. As noted in the medical and social scientific literatures, when fetuses undergo medical treatment, there are two patients: the fetus and the woman who carries it. Many theorists who study pregnancy and its political manifestations in a Western context therefore identify a potential “maternal-fetal conflict” (e.g., Mattingly 1992; Hubbard 1982; Blizzard 2005b). The concept is simple, but its ramifications are complex. The maternal-fetal conflict arises from the fact that a fetus lies within a particular woman’s body. It relies on her for its continued development. However, while the fetus in some ways is separate from the woman, it is also connected and fully dependent on her. A conflict may arise when its needs (or some may argue its rights) run contrary to the woman’s
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needs or rights. If a woman selects to abort a fetus, for example, some may argue that the woman’s and fetus’ rights are in conflict. It is interesting to note the rhetoric of maternal-fetal conflict presupposes a distinctive, cultural relationship in existence: a mother and a fetus (or would-be baby). This potential maternal-fetal conflict—not the pregnant woman-fetus conflict—has taken on a rhetorical life of its own. Even when referred to as the maternal-fetal relationship, the rhetoric still implies that the woman carrying the fetus is primarily a mother. Not only does the maternal-fetal conflict or relationship promote the view of a pregnant woman as mother, but the relatively new medical specialty of “Maternal-Fetal Medicine” further entrenches it. Though an in utero entity may exist as either fetus or baby, it is the rare case that a pregnant woman in a Western medical context is not a maternal entity. The Fetus as Cultural Artifact Different cultures and time periods have sought to understand the complex processes of human reproduction. Depending on the time and location analyzed, any variety of explanations are offered to make sense of these visible and invisible bodily processes (e.g., gestation and conception). Numerous anthropologists, sociologists, and historians have demonstrated that different cultures have particular methods and stories to understand, explain, and perhaps control pregnancy and childbirth (e.g., Jordan 1992). Their beliefs are supported within a cultural system. Their beliefs about reproduction fit with their beliefs about how the world works. Their theories make sense within the context in which they are created (e.g., classic examples of historically and culturally situated processes of human biology include the validity of the homunculus and humoral theory). Contemporary Western cultures also have beliefs about pregnancy and reproduction. Some scholars, refer to this contemporary moment, as “Scientism.” Scientism involves a belief in the power and authority of science over other forms of knowledge. Although the intricacies of Scientism are intriguing, they lie outside the parameters of this book. This book, however, does examine the notion that fetoscopy and other forms of Western biomedical medicine make sense only because of the
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cultural context in which they are embedded. Fetoscopy makes sense in, and is an outcome of, a scientistic context and must be examined with particular attention to the biases that such a cultural system contains. In this light, fetoscopy and the meanings associated with Western pregnancies are the outcome of cultural interactions. To understand fetoscopy is to understand those who live with it, describe it, and build it both socially and technologically. The patients in this work accepted a Western notion of safe hospital births and increased monitoring and intervention in troubled pregnancies (c.f., Davis-Floyd 1992). It is important to recognize that their experiences reflect a very specific, shared background and belief in medical science. They are fully entrenched in Western biomedicine. The cultural context of Western pregnancies is largely created through hopeful, positive myths of a joyously wanted healthy baby and the ability of medical science to assure a well-intentioned mother-to-be of a good pregnancy outcome. Indeed, for many parents-to-be, pregnancy is the happiest time of their life. In these cases, wanted fetuses develop in wellnurtured wombs as excited and anxious families build rooms in their hearts and homes for the new “little one.” Particularly in the United States, these stories and images create and perpetuate a belief that pregnancy is a relatively easy state to attain, and once attained, with proper medical care, observation, and in some cases intervention, will arrive at its fated conclusion: the birth of a healthy baby (e.g., Layne 2000). Unfortunately, for some parents-to-be this pregnancy story is far from reality. Some parents-to-be face dangerous medical conditions affecting both the woman and her developing fetus. Sadly, some pregnancies end in the birth of an ill, unwanted, or dead baby. As anthropologist Linda Layne demonstrates, understanding and accounting for the psychosocial and cultural affects of unwanted pregnancy loss are crucial in an examination of how women make sense of their pregnancy experiences (Layne 2003). A patient’s desire to avoid or minimize any of a variety of pregnancy losses is not only pertinent but paramount to the study of why and how fetoscopy develops. Fetoscopy is always offered and undertaken in a context framed by loss. In some cases, loss implies the death of a wanted fetus; in others it highlights the loss of the “perfect baby” and realization that an ill, disabled, or malformed fetus exists (e.g., Landsman 1998, 1999). Especially in Western
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contexts, pregnancy loss often invites feelings of maternal guilt and/or blame. In his work exploring reproductive catastrophe, psychiatrist Stephen Firestein demonstrates that the metaphor of pregnancy as production, child as product, and woman as laborer carries with it considerable implications for women who produce “defective products” in an era of high-technology, quality control, and assumptions of carefully monitored and altered gestation and birth experiences (e.g., Firestein 1989; see also, Landsman 1999; Layne 2003; Rothman 1989). Feinstein explains that “our family product in the present century tends to be our children— a source of pride and contentment or frustration, embarrassment, and disappointment” (Firestein 1989:38). Fair or not, the cultural assumption is that if something goes wrong with the pregnancy, it was a problem brought on by the mother: what did or didn’t she do to allow this to happen? It is within this tenuous and painful context of loss, blame, and guilt that some women attempt fetoscopy. While scholars search for appropriate terms to analyze pregnancy experiences and understand the ways in which loss is experienced, still others examine the iterative process of making a baby “real” (e.g., Layne 2003).5 Returning to his work examining reproductive catastrophe, Firestein reminds us that we all carry “private wishful images” in which we envision ourselves and our families (Firestein 1989:38). These images are personal, carefully crafted, and at times tragically antithetical to the reality of lived experience. As fetuses develop and become real to the women carrying them (e.g., a woman may feel fetal movement and view ultrasounds) and to those who surround her, many fetuses take on aspects of personhood: they are ascribed with qualities and characteristics that more readily track onto “baby” than “fetus.” As babies are created in utero, so too are parents or mothers. All pregnant women, and those who care for them, have wishful images. Fetoscopy patients may differ in the potential heightened emotions that come from making decisions to alter their pregnancies. Fetoscopic wishful images merge the wished for pregnancy before a tragic diagnosis and the hoped for outcome that follows surgery. While interacting with patients and medical workers, I often struggled to find ways to discuss what was occurring and to whom it occurred (for
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similar concerns, e.g., Layne 1992). Each fetoscopy case brought new “patients,” “mothers,” “parents,” “fetuses,” and “babies.” The degrees to which anyone or anything was more or less a “mother” or “parent,” or “baby” or “fetus,” varied. As noted previously, in cases where women undergo reproductive procedures and testing on their fetuses, there are at least two patients: the woman through whose body the procedures are conducted and the fetus on “whose” body the procedures are conducted (e.g., Mattingly 1992; Rothman 1986; Casper 1998). Although the fetuses are always patients in fetal surgery, so too is the woman who carries it and seeks treatment for it. From this point on I use the term patient only to refer to the woman who consents to a medical procedure. While I do not want to minimize the fact that the fetus is also a patient, while investigating fetoscopy I found that the term patient used in the hospital generally referred to a woman who, on seeking medical assistance for a problem within her body, entered a patient role and from whom medical informed consent was required. To allow for the dual identity of an in utero entity existing as both fetus and baby, I use the hyphenated term fetus-baby to indicate it may be either fetus or baby, depending on the political context and social network surrounding it/him/her. Fetus-baby underscores that one perspective of the entity may be vastly different compared to another. I use fetus-baby only to refer to an in utero entity in theory or from my perspective as a researcher. If interviewees spoke of a baby or fetus, I use their term as it suggests larger assumptions and worldviews. Similar tensions and confusions exist in speaking or writing about a pregnant woman who selects to undergo fetoscopy. Depending on one’s perspective, she might be a patient and/or mother. As a patient, she consents to surgery on her otherwise healthy body in an effort to help her fetus-baby. As a mother, she lives within a cultural context that assumes certain behaviors toward her fetus-baby.6 Reflecting the dual identity of fetus-baby, I also use patient-mother to underscore the complimentary and the conflicting facets of multiple, fractured identities. In still other cases, I use patient-parent to refer to the patient-mother and also to include a partner who, like the patient-mother, often must determine what are and are not acceptable treatment options for the fetus-baby.
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The Project Examined: Ethnography and Methodology To investigate fetoscopy I developed research strategies, largely anthropological, to conduct an ethnography of fetoscopy. With ethnography an “outsider” moves to a foreign environment to study the ways in which other cultures live (e.g., Denzin and Lincoln 1994). Ethnographers combine observation and interview techniques with their lived experience to build a knowledge basis of intimate, personal encounters and formalized, professional interactions. The ethnographer comes to know the site and its inhabitants in ways that merge the personal and professional into a hybridized existence. In the later twentieth century, Western anthropologists and social scientists began using it reflexively, to understand our own cultures (e.g., Martin 1987). In recent years, social scientists, including medical sociologists and anthropologists, have entered U.S. medical clinics to understand the ways in which we create medical concepts and procedures in an effort to understand how patients and their medical caregivers create meaning within medical interactions and sociocultural experiences (e.g., Rapp 1999; Taylor 1998; Martin 1995). The data underlying this work lie in the stories of fetoscopy patientmothers, their companions, and medical providers between the years 1993 and 2005. To meet these people, I worked alongside determined medical providers and desperate patient-mothers hoping to alter, fix, and know better what ailments affected unborn fetuses. Although few clinics worldwide offer fetoscopy, its use is growing, and slowly more physicians and centers are offering it to their high-risk patients. It is difficult to estimate how many centers offer fetoscopy because its definitions and use vary (e.g., Blizzard 2000; Quintero 2002a); however, while I was on site at the hospital (1997–1998), the nurse who organized most of the program informed me that she believed there were anywhere from four to seven clinics in the United States that offered treatment for varying conditions and three to five clinics outside the country. Since that time, she believes the numbers have increased dramatically to approximately 10 clinics in the United States and 15 outside (as of spring 2005). When recently discussing these numbers, she also added that in 2005 it is even more difficult to identify how many clinics exist because so many physicians are attempting some form of endoscopic in utero procedures
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(including fetoscopy) in a variety of clinical settings. Again, depending on how one defines fetoscopy, the numbers of surgeries and centers differ. All procedures reported in this book were performed by Dr. Marc Martinez, a perinatologist and leading fetoscopic surgeon, at one of two U.S. locations: City Hospital or Holy Names Hospital. City Hospital is a large, secular, medical school where Dr. Martinez practiced in the years before 1996. Holy Names Hospital is a small, Catholic women’s hospital, were Dr. Martinez worked since leaving City Hospital in 1996 until his recent departure in 2005 to a secular medical school, University Hospital. No interviews or observations were conducted at University Hospital or City Hospital; however, I did interview former patient-mothers from City Hospital. My ethnography led me to spend a year at Holy Names Hospital (1997–1998) to understand the development and implications of fetoscopy. Intriguingly, when I began this project, I had not anticipated working at a Catholic Hospital. As noted, Martinez left City Hospital in 1996. I contacted him about my project before this departure and asked if he would be willing to open up his work to my ethnographic analysis. We spoke over the phone and eventually met in person. After our meeting (at City Hospital), he agreed that he and his practices would be the subject of my study. I left City Hospital and returned to finish my graduate courses and after completing my courses and exams, I began preparing for my ethnography. I contacted City Hospital in my effort to let Martinez know that I was ready to commence research. At this point, I was informed of his move. I was shocked that he had gone to a Catholic setting (figuring fetal politics would be heightened) and that it was a community-based hospital. Nonetheless, he assured me that he still supported my work and was ready for my arrival. I went. Holy Names is an intriguing location for cutting-edge fetal research. It is not a large medical school (such as City Hospital or University Hospital) where students and faculty conduct daily research; rather, it is a small community-based hospital that is colorful, pleasantly decorated, and friendly, and except for complications to pregnancies and surgeries, its employees are generally not faced with life-and-death, traumatic situations. As a physical structure, it is not imposing and, for the most part, I was extremely comfortable in this environment as it allowed quick
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friendships and lessened a sense of dissociation or awkwardness I might have felt in a larger hospital. During my stay at Holy Names I had the opportunity to meet a variety of individuals and attend many medical events. Throughout the year, I observed 20 surgeries, interviewed 18 fetoscopy patient-mothers and 10 patient companions (generally a partner or “father” of the fetus-baby). While at the hospital, I followed fetoscopy workers in the hospital, to animal research protocols, and to professional conferences. I developed strong, personal relationships with members of the fetoscopy team. Though my interactions with patient-mothers were more limited, I also followed them through their procedures (sometimes attending follow-up ultrasounds), visited with them in their hospital rooms, and often joined their family members in the cafeteria for coffee and conversation.7 As an ethnographer, I joined patient-mothers, their companions, nurses, physicians, chaplains, and other professionals, forming the social web and cultural context in which fetoscopy was experienced, procedures constructed, and its meanings made. Patient-mother interviews typically lasted 30 minutes to one hour, were conducted in their hospital rooms, and took place 24 to 48 hours following surgery. During the interview I asked them to tell me about themselves and their experiences with fetoscopy. I listened to their stories, including how and when they chose to begin and end them. At the conclusion of the interviews, many of the patient-parents thanked me for my time and interest. During these final exchanges of thanks and wellwishes, many also expressed their concern over what they considered to be a general lack of knowledge by both medical and laypersons about their conditions and potential treatments. Many wished to be interviewed in the hope that more people would learn about their condition and should someone face a similar situation they might find my work, and the interviews that inform it, helpful. In some cases, if patient-mother consent was given, I accompanied the surgical team in the operating room to observe surgery. The cases were diverse, ranging from purely diagnostic assessments of the fetus to operations including shunting, biopsy, and ligation (tying off an umbilical cord) as well as surgery on placental tissues. While in surgery, I stood in the corner of the room (approximately 15 feet from the patient-mother’s
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head), where I could watch the surgical field (the area where only those “scrubbed in” may enter) and the medical professionals working within and around it. I was allowed to take my fieldnotes into surgery, where I recorded events as they unfolded. Beyond patient-mothers and their companions, I interviewed 38 medically and nonmedically trained professionals including, but not limited to, nurses, physicians, ultrasound operators, chaplains, social service professionals, and animal researchers.8 Like the patient-mothers, I approached them with a description of the project and asked if they would be willing to be observed and interviewed. The response to my project was overwhelmingly positive, with most people consenting to interviews and observation, and assisting in locating others who could help me. Professional interviews generally lasted 30 minutes to an hour and were conducted over the phone, during breaks in personal offices, in the hospital library, and in empty patient rooms. During the year and a half following my ethnography at Holy Names, I interviewed 24 former patients who had fetoscopy at City Hospital or Holy Names before I began my ethnography in 1997. Because of patient confidentiality, I could not contact former patients directly. Instead, I gave the physician’s office assistant approximately 150 packets that contained my informed consent and short project description. The assistant sent the packets (including a letter of introduction from Dr. Martinez) to their former patients. Thirty-five consents were returned directly to me indicating that they wished to be interviewed (not all could be interviewed because information on their consents was incomplete, e.g., no phone number or other method for contacting them). Some packets were also returned to the medical office without a forwarding address and it is reasonable to assume that some were lost. If the office had incomplete information on a patient, a packet was not sent. Because of the complexities of mailing and translation, no packets were sent to international patients. In 2005 I again returned as a researcher to Holy Names. Although I left Holy Names in 1998, I kept in contact with those at the hospital and made return visits as a friend and watched their organization grow. Since my initial contact, it is clear that many changes have occurred and many things remain the same. Again I sought and gained research
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approvals and returned to my site to update my research. With the assistance of the research coordinator, we sent my informed consents to the patient-mothers who had undergone fetoscopy since I left in 1998. She sent out more than 500 packets to patients who underwent fetoscopy between my departure and spring 2005. From over 100 of those consents returned directly to me, 20 were sampled to complete this book and 13 were completed (again not all interviews could be conducted because of scheduling conflicts and a lack of contact information). Consents were sorted by time zone (according to the post mark), and I sampled blindly from each time zone to reflect the percentage of consents returned. As the project continues, I will interview the remaining women. However, the sampling system was created for the purposes of this book, to balance newer voices with the number of older voices. Within what may seem a homogenous group of patient-mothers (e.g., all selected to undergo fetoscopy by the same physician for a handful of rare in utero conditions), individuals’ stories and experiences show considerable variation in the meanings they attach to their procedures, pregnancies, views of motherhood, and assumptions governing appropriate, reasonable health care. It is important to note that the stories that inform this book are necessarily self-selected. For example, I interviewed only patient-mothers who chose to undergo fetoscopy and received treatment. To understand fetoscopy decision making better, it will be informative to cast a wider net and identify and interview women who chose not to undergo the procedure, just as it will be particularly useful to interview women who wanted the procedure, but could not afford it or were denied its use in the manner desired. These examinations have yet to be made. Although ethnographies are useful tools for understanding the ways in which medical interactions are constructed, shaped, and explained, the method has been criticized. Notably, ethnography was first formulated as a method through which a supposedly objective observer could view social interaction, analyze it, and later deliver his or her findings. The ethnographer assumed that his or her presence at the location and his or her personal beliefs did not affect findings. This fly-on-the-wall model has come under sharp criticism, and many researchers argue that
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by simply “being there” an ethnographer does affect the context studied. His or her assumptions necessarily shape research findings. In response to these critiques, new ethnographic approaches are more reflexive, asking the ethnographer to consider how his or her presence affects the context studied, and thereby its findings (e.g., Hess 1997). My research for this book uses new ethnographic approaches recognizing that my being there did shape the context of fetoscopy experiences, and my personal hopes, fears, and beliefs surrounding high-risk pregnancy and reproductive encounters likewise affect the outcome of my analyses and the arguments presented in this book. Like traditional ethnographies placing anthropologists or other social scientists in foreign environments, my ethnography took me to a foreign context: a Western women’s hospital to view and understand fetoscopy. Though some may not view the Western hospital as foreign or exotic, much of it was unlike anything that I had encountered (c.f., Rapp 1999). More vexing, however, was that not all of fetoscopy was completely foreign because I am a consumer of Western medicine. Although I was somewhat familiar with the general customs surrounding scientific approaches to medicine, I lacked formal medical training in obstetrics or high-risk pregnancy. As a researcher I lived the juxtaposition of familiarity and confusion. For ethnographers this is not an unusual state, yet it remains unsettling (e.g., Cartwright 1998). I was fully immersed in a biomedical framework in which I was aware enough to know if something seemed wrong, yet I lacked the specialized knowledge and training to react within professional biomedical customs. When I arrived I did not know what constituted accepted aseptic technique; I did not know how to read the surgical board; I did not know what was considered biomedically normal and what was not. I learned these things with the help of hospital staff. Unfortunately, at times, one nurse or physician would tell me one thing only to be contradicted by another person. I came to recognize from these differences in opinions among the medical staff the uncertainty of their facts. Although all of my medical informants believed in and based their decisions on medical facts, at times they disagreed over what those facts were and how to respond to them. These differences in opinions, further muddied the decision-making context of fetoscopy and added to the complexities of fetoscopy experiences.
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If physicians and nurses could not agree on what was happening and how to respond to it, how was a patient-mother, desperate for consistency, to make an informed decision? I ultimately determined these decisions were best framed as informed decisions, based on possibly conflicting information. In this light, being informed is not the same as being certain, and patient-mothers simply made the best decision they could given their highly problematic pregnancies. Because the best decision for one patient may not be the best decision for another, advising them through these processes is tricky for their medical caregivers. My research project was my creation, but even more, a co-creation with those at the hospital. I was both an insider and outsider. As an insider I had a high level of intimacy with many of those whom I studied. Together, we talked through problems and issues, both professional and personal. At the same time, I was an outsider, an observer. This Janusfaced existence, as participant and observer, was at times difficult for me to negotiate and for them to understand. I was a participant who worked with the nurses, physicians, and anyone else (including the patientmothers) who needed extra assistance. Unfortunately this closeness proved a double-edged sword. While I was a trusted friend and researcher with access to incredible information, my participation was also confusing to some of the hospital staff who did not fully understand or accept my interest or research in the fetoscopy program. These individuals included administrators, nurses, and physicians, though many administrators, nurses, and physicians were particularly supportive of my research and valued my presence in their hospital. It is difficult to overstate how tightly connected and visibly linked I was with the fetoscopy team (notably the nurses). Unlike the physicians who traveled between multiple hospitals in the area (including Martinez), the nurses stayed at Holy Names. I, too, stayed at Holy Names because it was the only local hospital that delivered fetoscopy. With time, my interest in all things fetoscopy led to deep relationships with many of the nurses who were also drawn to the procedure and wished to understand it in its larger social and cultural contexts. Yet this close affiliation with the nurses, while valuable, was also perplexing to a few at the hospital who came to assume I was a fetoscopy nurse, although I explained my project to as many people as possible. To offset this confusion, I tried to
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make myself as physically different from the nurses. Unlike the nursing staff, I never wore scrubs outside of the operating room and always tried to carry my research notebook, a pen, and perhaps even a tape recorder as I worked at the hospital. Professionals at the hospital would suggest questions that I should consider and interviewees I should approach. At times they took me to places off limits to the layperson: I saw the inner workings of hospital sanitization procedures, pathology labs, and preadmission testing. I do not, however, want to overstate the access granted to me. At no time, for example, was I granted, nor did I seek access to, confidential patientmother records. I also did not attend the ethics meetings in which some fetoscopy cases were discussed.9 My decision not to attend these meetings must be explained. The only part of hospital interactions Dr. Martinez requested I not participate in (i.e., observe) were the ethics meetings (on being asked not to attend specific situations, e.g., Katz 1999; on gaining access to denied documents, e.g., Casper 1998). We had never discussed the ethics board, and in fact I found out rather late in my stay at Holy Names that the ethics board met for twin ligation cases. I mentioned to a few medical professionals that I should try to sit in on the meetings to hear how individuals discussed life-and-death issues relating to their patient’s fetuses. One day a member of the committee approached me in the hall and said that she heard that I was going to come to the next day’s ethics meeting. I was surprised. I knew that a case was pending, but had not yet discussed it with Martinez. I did not know who suggested that I attend the meeting. I arrived the next morning prepared to attend the meeting. I saw Kay, a fetoscopy nurse, and asked her if it was Martinez’s idea that I attend; she was not certain, but knew that the others knew I would be there. I told her that I wanted to wait for Martinez before going to the meeting. When he arrived for the meeting I stopped him in the hall (the others were already assembled in the meeting room). I asked him if it was “okay” with him if I attend. He seemed somewhat shocked by my request and explained that he feared people might not speak their minds freely if I were there. He was concerned they might think I was judging them. I was surprised by his response. This was the first time he had limited my interactions in the hospital. He headed to the meeting as I
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continued to stand in the hall. I decided to discuss the issue with him at a later time, and headed away. Less than a minute later, Martinez returned to the hall and called to me. I returned, and he simply said, “They said it’s okay” and motioned for me to follow him. I was confused. He still seemed concerned over my presence at the meeting. As we approached the doorway, I grabbed his arm and we stopped walking. Up until this point he had not excluded me from his practices, patients, or concerns. I wanted to verify that he thought I should not attend the meeting. He looked me in the eye and said, “Yes.” I nodded and told him that I appreciated his concern and would not attend. I placed his many years of fetoscopy decision-making experiences against my few months. Perhaps my attending the meeting would lead people to curb some concerns or express others. Perhaps that would not be a bad outcome. There is no way to know for certain, but out of respect for Martinez’s experience of fetoscopy decision-making and my desire not to cause harm to my informants (including potential patients), I chose not to attend the meetings.10 Just as I needed to feel content in the ethics of my project, I recognized that Martinez must also feel content with the ways in which my project affected his. He was deeply concerned about impinging on the ethics board’s abilities to speak out without feeling judged. Although the loss of these ethics meetings does impinge on my understanding of fetoscopy, I remain content in my decision. My knowledge of the meetings come from my interviews and discussions with its members. With few exceptions, I had an incredibly close relationship with many on the fetoscopy team, and these friendships spurred a trust between us that undeniably broadened my access to individuals and information. I was not a medical professional or hospital employee, however, I was a guest, a social scientist conducting an ethnographic analysis of fetoscopy creation and the decision-making surrounding it. As an outsider, I found myself at times wanting to keep a distance from the informants (as opposed to my friends) to retain some sort of objectivity. I wanted to avoid the painful critique of going native or of being overly biased by emotional attachment to many of the individuals at the hospital. Although numerous social theorists argue that such theoretical and emotional objectivity is an impossibility (e.g., Harding 1991; Restivo
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1994; Wyer et al. 2001), I found it difficult to remember this, especially when informants stressed the advantages of having an outsider analyze fetoscopy objectively, as though I had no personal interest in what I studied beyond its academic impact. As these assumptions emerged, I grew more anxious. I knew that I was not and could not be objective; how could I convince them that not only was objectivity impossible, but the assumption of its existence could even be detrimental to critical, reflexive analysis? The importance of objectivity was a source of recurring tension between Martinez and me. Over time, it became clear our understanding of objectivity in data accumulation was different. He was concerned that my project not be “biased” and that it reflect the “real” context of fetoscopy. For him, objectivity implied that I collect both the good and bad outcomes. For me, objectivity had less to do with who and what I studied than with understanding the scope of my perceptions and recognizing the limits that my method and theories placed on my analysis. At one point during my work I was so concerned with his preoccupation with objectivity (and our different use of the word) that I worried he might not understand my project and approach. Fearing future backlash or misunderstanding, we sat down to discuss objectivity. I explained that I was a value-laden researcher and as such my study, or any study for that matter (including his own), was inherently biased in multiple directions and brought with it the values and assumptions of the researcher. Following our exchange, Martinez understood how I viewed objectivity, however, he, and others, retained the belief that one could study something by neutrally looking at the good and bad outcomes associated with it, and that I could somehow achieve that stance. I assured him that I was looking at good and bad outcomes as neutrally as possible, but my values and politics necessarily affected the development, process, and outcome of my work. While I tried not to be judgmental and to be as open as possible to a variety of positions and beliefs, I also recognize the impossibility of viewing and analyzing circumstances without the influence of my own background and training, including my morals and politics, and the emotions that drive them. It is not clear how distant from a topic an ethnographer must be to accumulate valid data (e.g., Browner 1999). According to feminist
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methodologist Shulamit Reinharz, the question of distance has been an issue for many researchers: The methodological literature on participant observation is divided among those who advocate closeness and those who advocate respectful distance between the researcher and the person studied . . . [footnote]. Respectful distance is supposed to avoid the danger that the researcher will “go native” or identify with the people studied; closeness is supposed to enhance understanding. In the “respectful distance” model, overrapport represents the researcher’s neurotic failing to maintain objectivity or maintain his/her separate identity . . . [footnote]. Many feminist researchers, by contrast, take the position that closeness with women is necessary in order to understand them. (Reinharz 1992:67)11
As Reinharz suggests, feminist approaches to research may base studies and questions on friendship and willingness to care about the informant and context. She explains: “Another way to think about the dilemma of closeness/distance is to acknowledge that each setting requires the fieldworker to take a different approach. Some settings require anonymous . . . [footnote] relationships while other require intensely personal relationships . . . [footnote].” She concludes, “The setting, rather than methodological ideology, defines the appropriate role” (Reinharz 1992:68). Although Reinharz is writing about feminist research, her assumptions and arguments also pertain to my approach as constructivist research—that is, research based on the theoretical assumptions that all things and knowledge are created and understood through, and are an outcome of, social interaction.12 At their core ethnographic studies are an analysis of the relationships that an ethnographer shares with informants and the experiences and stories that such relationships bring about. In some cases relationships may be more distant or professional in tenor while in other cases relationships may be very personal and intimate. There are benefits and disadvantages associated with each end of the ethnographic spectrum. As Reinharz suggests, I necessarily forged friendships and close relationships with some of my interviewees. At the same time, I also developed relationships that, while cordial and professional, were more distant. My obligation as ethnographer is to consider how my different intellectual and emotional distance among informants shaped my perceptions and analysis.
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Just as ethnographers must negotiate how close or distant they wish to be to an informant, they must also decide how familiar they wish to be with a topic before commencing study. Before I left to conduct the ethnography, I read as much as I could on fetoscopy; however, it was not until I arrived at Holy Names that I recognized and appreciated the emotional work that surrounds fetoscopy as a lived experience. It was one thing to understand fetoscopy within medical history and theoretical critiques, but another to accompany patient-mothers and medical workers through their experiences. Although I was prepared intellectually for the work at hand, I was sadly unprepared to face the real data and drama of fetoscopy, including the trauma patient-parents incur as they make life-and-death decisions. When I began this project, I focused so thoroughly on the aforementioned medical reports and social scientific critiques of reproductive technologies that I was relatively unaware that investigating fetoscopy entailed theorizing people’s hopes and fears. As I listened to stories, particularly those of the patient-mothers, I felt a growing responsibility not only to theorize them, but to help them. I did not want to add to their potential objectification by aseptically recording their narratives, and then walking away to analyze it later (c.f., Rapp 1999). One can argue that theoretical findings would eventually help them by drawing attention to their interactions (for example writing academic articles and publishing this book), but I was left with a growing sense of helplessness while at the hospital. During emotionally traumatic and compelling times, patient-mothers and their caregivers were helping me, but how could I help them? Did I need to help them? Should I help them? Was it enough that they had someone to talk to about their experiences? Increasingly, I wondered if I was reflecting a similar voyeurism to that critiqued in medical encounters. Like surgeons using endoscopes, I also peered into life-in-the-making, removed it from its initial context, analyzed it, and now offer my own interpretation of the situation. My recurring question in the field, as now, was, What am I doing to make the situation better? To fulfill a reflexive and constructivist approach to analyzing fetoscopy, I did become involved in fetoscopy development. When team members asked me for assistance, I often gave it. When I had concerns,
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I often expressed them. My experiences at Holy Names were coconstructed with medical workers and patient-parents struggling to form narratives and make sense of what was occurring and to whom. We worked to identify procedures and find ways to speak of them. When I was medically or emotionally lost or confused, I approached my medical friends for clarity or advice. When they had concerns such as how ligation and abortion may differ in parental grief, they too would come to me. One area in particular in which nurses found my work of assistance lay in understanding why some people did not like or support fetoscopy. Some nurses so believed in the procedures that they could not help but wonder how anyone could not see it as a great advance in modern medicine. Ultimately, their inability to see fetoscopy from others’ perspectives led some fetoscopy nurses to assume that resistance had to be based on ignorance: all that was needed was education of the nay-sayers. Unlike fetoscopy nurses, I read social science literatures that critically investigated the ways in which reproductive technologies can affect individuals and communities (see chapter 3 for more details). Based on this familiarity, I was able to advise them on how fetoscopy might legitimately be viewed negatively (e.g., focusing attention on the fetus and not on the patient-mother). To help the fetoscopy nurses find ways to educate others about fetoscopy, I suggested “reframing” it in their own presentations less as a miracle of modern medicine, and more as a complicated procedure with many effects. Working to see it as a complex procedure might help them find a way to understand why impassioned arguments broke out from time to time, and to respond constructively to what otherwise might become a hostile, personal argument questioning each other’s ethics and integrity. To illustrate, one day a few fetoscopy nurses were developing a “fetoscopy poster” for nurses’ week. The poster was supposed to highlight the use of fetoscopy at the hospital and draw attention to its benefits. They asked me to join them. Sitting in the hospital library, we discussed what we all thought the poster should contain and, importantly, what to title it. I recorded the following in my fieldnotes: I just . . . participated in a meeting with Sue, Kay, and Becky. They were trying to decide what to write [as a title], etc. [for the poster]. Becky liked the idea of
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“The Fetus Has Arrived.” I told her I thought that sounded a bit Star-Treky and that it tended to be a bit fatalistic—indicating that we are on a path outside of human control. Kay liked the idea of a “New Frontier.” I said that I often found “new frontier” within the [medical] literature [and critiqued within social science]. I said that it invoked a cowboy out lassoing fetuses any old way. She said that she still liked it. I worked on it and finally suggested “New Developments in Fetal Therapy Offering Hope at Holy Names.” [They all liked that and] put it down [as the title for the poster].
Although co-constructing the environment that I studied by offering comments and information while in the field may not be readily accepted by some social scientists, for others it may be a matter of course and an ethical imperative. A second example of the sharing and openness that was created between the nurses and me stems from the overt sharing of our professional languages. I started to use medical jargon, and they began to use academic jargon. By sharing languages we came to understand each other’s training and potential usefulness to the developing specialty of fetoscopic research. At the same time, the terms offered us a chance to find humor and comfort in our different ways of understanding the world. To illustrate, one term that we shared was footnote. One day I brought an article that I was writing to the hospital. When I put it on the lunch table they laughed at my extensive use of footnotes. We started talking about footnotes and how they convey information that is helpful, but not necessary, within the text. Over time the term footnote took on special meaning. The nurses used it as shorthand to let me know if there was something occurring in the hospital that might be a background issue for my project but not directly related to fetoscopy. Instead of saying to me, “There’s a procedure I think you should see,” they would say, “I have a footnote for you.” The playful use of language and the openness that existed at my site, as demonstrated in these two examples, was gratifying. I had a place within the fetoscopy team. But now, as I reflect on the time and analyze the experiences, a problem emerges: Which parts of my experiences are eligible for reporting, analyzing, and discussing in public venues (e.g., this book) and which are not? In situations where I believe that information was not given as research material or in circumstances where my analysis may scoop medical research findings, I do not
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reference the matter in this book. Nonetheless, the knowledge informs my analysis. Reproductive anthropologist Rayna Rapp readily acknowledges that at times she is called on as a “trusted insider” to help genetic teams with patients or to offer advice on improving services for amniocentesis (Rapp 1999). In these cases she assisted her informants and writes: “While, in principle, I might have demurred, insisting that I would provide feedback ‘once the study is over,’ in a case like this, the study seemed unending. And the practical needs of service providers and patients are immediate.” She concludes: “The ethics of giving feedback in a ‘real world’ situation where access to resources and the conditions of choice are everywhere at stake had to be resolved in a way that was biased toward what I considered responsible application of my accumulating knowledge” (Rapp 1999:21). From my experience, the “immediate” needs to which Rapp refers often lead to quick decisions by the ethnographer that stem from overtly ethical questions, such as knowing what part of a patient-mother’s procedure counts as local public knowledge (e.g., whether or not a surgery is on the schedule), to the less overt, such as deciding if the ethnographer should answer questions about whether the physicians seemed concerned or confident during surgery. Ethical quandaries abound in relationships with informants, and thus these relationships prove both rewarding and problematic. As Rapp refers to them “serendipitous” or “karmic” approaches, while enjoyable, are also difficult when the researcher becomes a “guinea pig” within her own studies (Rapp 1999:14). Following over two decades analyzing amniocentesis, Rapp finds herself in the position of information gatekeeper, trusted adviser, and informed friend. She can never leave the research behind because research and life are now relatively indistinguishable. She explains: When old friends and neighbors have amniocentesis or chronic villus sampling, I call them up. When their friends and neighbors have a question about amniocentesis or a prenatal diagnosis problem, I am likely to receive a phone call in return. Such contacts provide an escalating whirlwind of data that blows through my daily life, and the daily lives of my friends and family members. (Rapp 1999:14)
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It is not surprising that reproductive analyses blow through daily life, because reproduction (the wish to attain or avoid a pregnancy), for many, is part of daily life. Like Rapp’s experience, I too have had friends ask about my work in anticipation of their own reproductive experiences. When a friend of a friend of my sister-in-law was told that she was expecting twins, my sister-in-law called to ask, “What is the name of that twin disease you study?” When studying human reproduction and decision making, the researcher can never just “leave the work at the office.” Any pregnant, or would-be pregnant woman’s dreams, hopes, and experiences become relevant to the study and context of a new reproductive procedure, including her own. Frequently patient-parents, medical staff, and others that I interviewed would ask me, what do you think of the procedure? Although I came to anticipate this question, each time it was asked I was reminded that prenatal decision making is often cast in a context of right and wrong, true and false, fair and unjust. The longer I worked at the hospital and the more I learned about different experiences, the more difficult it became for me to think in such stark dichotomies. My responses to these inquiries often reflected my belief and findings that, though some generalizations can be made about fetoscopy experiences, the meanings and effects of procedures are best understood by analyzing particular social interactions of specific pregnancies. From these details, general themes emerge; however, general themes do not, and should not, imply right and wrong fetoscopic uses. Acceptability is contextual. Studying Up and Looking Down As ethnographers and others turn their attention to their own cultures as suitable areas for analysis, many researchers have found themselves in theoretical and political binds (e.g., Browner 1999; Casper 1997; Rapp 1999). The difficulties of entering a context in which professions have a firm grasp on a local environment is certainly threatening to many research projects that seek to analyze and critique those professionals. Not only does the ethnographer require the invitation and consent of those studied, but also her or his expertise, views, and ability to add to
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conversations or experiences may be overlooked or ignored. Anthropologist Carole Browner humorously illustrates this point when commenting on the potential benefits and risks of conducting medical ethnography within biomedicine: While in some cases this has led to fruitful collaboration, often the results can be frustrating for all concerned. To give one example, my colleague, Linda Hunt spent three years working in a research center in a department of medicine on a number of projects focusing on the impact of chronic illness on ethnic minorities. Her efforts to introduce an anthropological perspective were often rejected by her physician-collaborators, who viewed such concerns as esoteric and beside the point. She has characterized her central experience at the research center as an ongoing clash of paradigms. As her tenure there was drawing to an end, she described a dream she had. She wrote, “In my dream I sat at a conference table, arguing with a group of frustrated physicians who were earnestly urging me to see their point: ‘If it looks like a duck, walks like a duck, and quacks like a duck, it’s a duck!’ one shouted. Equally frustrated, I shouted back: ‘What do you mean by ‘a duck’?” (Hunt 1994:1). (Browner 1999:138)
Ethnographers and those they study may have hardly commensurate worldviews; thus, the success of many studies relies on the shared willingness of the ethnographer and those studied to be open, honest, and critical about their activities and relationships with one another. Medical ethnography is risky when the technologies are morally amorphous and trust and respect between the social scientist and medical team is not achieved. Trust is a rocky, two-way street. In recent years, a notable and sad case emerged in the field of fetal surgery and social scientific analysis when medical sociologist, Monica Casper, attempted to conduct the first ethnographic account of open fetal surgery (Casper 1997). According to Casper, after she conducted an interview with a former patient, she sent the woman copies of her work (published and unpublished). The patient was pro-life and did not like Casper’s politics and by extension her arguments. The former patient sent the unpublished work to the fetal surgery team. At this point, Casper’s key informant (at the hospital) called Casper and expressed worry that her identity was not well masked; she further let Casper know that the fetal surgeons felt angered by her work (Casper 1997). To better understand each other’s view of fetal surgery and Casper’s project, the two of them sat down to discuss their differences. Casper writes,
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For the most part she agreed with my critical perspective and theoretical arguments. Yet she felt that I portrayed the fetal surgeons as having no integrity when they are in fact “really nice people.” I explained that as a sociologist, I am not concerned with the personalities of the fetal surgeons. Rather, I care about their roles as medical workers in a specialty focused on fetal work objects, although biographical information may make for juicier narrative. After the meeting I felt as if my key informant and I had resolved at least most of our problems. (Casper 1997: 249)
Although Casper and her key informant were able to resolve most problems, the fetal surgeons remained angry. Casper is reflexive in her work, asking if she misrepresented herself, but ultimately finding that while she may not have always been forthcoming, she did not hide her politics. Her research activities, though well meaning, led the physicians to sever contact with her and she became “persona non grata” at the hospital (Casper 1997). Casper’s case offers compelling reason and evidence that ethnographers may be both physically and intellectually pushed out of a research site should the differences between their views prove too alienating to those studied (e.g., Casper 1997, 1998). Casper and I share some theoretical and political concerns, but we diverge in our methodologies. Casper framed her work as a woman’s health issue and, as she states, is not interested in the personalities of the surgeons. I, on the other hand, though recognizing and accepting that fetal surgery should be seen as a woman’s health issue (and the larger sociological concerns it raises), am also fully entrenched in a new ethnographic approach in which emotions and personalities must be made apparent. While conducting my ethnography, it became clear that emotions and personalities (e.g., kindness, empathy, distance, curtness) directly affected how women-patients and their caregivers (and supporters) reacted to fetoscopy. As fetoscopy nurse Kay Brown told one grieving father, “We give a lot of hugs here.” For this analysis, the fact that hugs are given freely and that nurses do pray during surgery is as important to data collection as recording narrative descriptions of fetuses. Though Casper and I take different methodological approaches, the key is not to accept one over the other, but to bring them together to see more clearly the activities that perpetuate fetal surgery/fetoscopy as a woman’s health issue and as an individual, traumatic event.
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The theoretical and methodological difficulties of studying professions that have a higher concentration of power within them than that of the ethnographer is often termed studying up (e.g., Casper 1997; Katz 1999; Nader 1969; for criticism, see Layne 1998). When I arrived on site, I anticipated having difficulties studying up. I assumed that I might be the next ethnographer to lose a research site. My assumptions were incorrect. Instead, it became clear that traditional studying-up problems, such as those affecting Casper, would for the most part not plague my research (e.g., Casper 1997). As noted earlier, I developed strong and close relationships with many of the fetoscopy medical workers. These relationships, and my amorphous identity that shifted between being a participant and an observer led to other methodological and practical tensions, which shape the findings presented in this book. Following the new ethnography, in which the ethnographer is visible at the site, in the text, and critically aware how her personal relationships affect project development, implementation, and analysis, at the hospital and in this work, I strive to account for my own subtle shaping of the project and to remain attentive to how others shaped it through their interactions and experiences with me (e.g., Landsman 1998; Star 1995). One of the more exciting attributes of the new ethnography is that it includes in the analysis the feelings and emotions of the people giving, receiving, and analyzing medical interactions. Through these interactions meanings are made. At Holy Names, it soon became clear that the nurses, more than others, tended to be very open about their feelings regarding patients, procedures, and other issues. This was particularly the case with Kay Brown, Martinez’s medical assistant and coordinator of the fetal therapy program. I spent most of my time at the hospital following Kay to various medical events; as a result, her vision and beliefs shaped and deeply affected my questions and findings. If Kay or others felt that a patient was too upset, too sad, or too scared to meet with me, they might readily suggest that I not approach the patient. In these cases, I willingly accepted the advice and complied with their wishes. These instances were few and far between; however, it does demonstrate the potential for others to accuse me of being co-opted or not being critical enough in my methodological approach—I could be accused of going
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native. However, my willingness to heed their advice and wishes also demonstrates my professional respect and personal faith in those with whom I lived, worked, and studied. This trust and respect was built over time and through multiple interactions. My approach was to acknowledge our similarities and differences in as open an environment as possible. While we may not have always agreed, I am thankful to the professional and personal integrity of those at Holy Names who not only recognized it might be risky to open their activities to social critique, but ultimately in word and deed assisted in a genuine effort to learn about what they did. In fact, one day, toward the end of my time at the hospital, I interviewed Martinez. I asked him if he saw any advantages or disadvantages in my being at the site. His answer alludes to the larger political and social context that we created: No disadvantages. The only disadvantage perhaps will be the workload imposed on my . . . [administrator] upstairs, but we don’t mind, because it’s part of what she can do. We do it with pleasure. So, no disadvantage. Quite the contrary. All advantage. Number 1, because you are going to be able to complete your thesis on what you started out to do and although this may sound trivial, this may sound like a given, we both know that this, in fact, may not be the case, that somebody starts out a thesis project and it falls through in the middle of the project, and you know, you have to sit down and think about something else to do and it just doesn’t necessarily flow. So, number 1, that you will be able to do your thesis project. Number 2, because I don’t think that we have, in fact, seen all of the angles that our activity [that it] can be seen from and you certainly provide a unique angle, . . . a point of view, to what it is that we’re doing. Anthropological point of view, a liaison between technology and the patient. It’s a very, very unique point of view. And I think that the more we learn, the more angles we learn of this activity, the way it’s seen by patients, the way it’s seen by nurses, the way it’s seen by communities, the way it’s seen by politicians, by other healthcare providers, paramedical staff, etc., etc., the more we’ll be able to avoid problems and the more we’ll be able to improve on what we’re doing. So, all I see with your presence here is a great advantage.
Casper’s experience was different. She notes about her site and its inhabitants, “Ironically, although fetal surgeons and other medical workers have often called for social and ethical analysis of their work, they squirmed uncomfortably under the sociological lens when it was directed at them. Yet this is understandable, especially if one takes the deeply
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controversial nature and contexts of their work into account” (Casper 1998:24). The politics of my site, and the personalities contained within it, created a very different context. A Product of Emotional Work: Moving Forward Developing, delivering, undergoing, and analyzing fetoscopy experiences is difficult. A timeline or data point cannot measure all of the efforts in these practices. Much of the meaning and experience of fetoscopy is invisible, tacit, and silent: patient-mother tears, physician glances to the floor, and long blank stares at informed consents, all created the emotional context of fetoscopy. I embraced, sometimes with pain and confusion, the emotional, yet critical, view that my ethnography afforded. While on site I vacillated between being overjoyed and distraught over my involvement with fetoscopy. When cases ended positively, or former patients contacted the hospital to let us know the baby had arrived and Mom was doing well, I felt a tremendous amount of pride in “my site.” The procedure offered a desperate mother a final chance to save her baby. At other times, I cried on hearing that a mother had lost her pregnancy or perhaps worse (from my limited, yet personal perspective) when I accompanied a patient-mother to a follow-up ultrasound, only to realize that her fetus-baby was unexpectedly dead. As patient-mothers rode their emotional roller coaster, so did I. This is NOT to say that we shared the pain or hopes, as the loss of a wished-for baby is likely one of the most painful experiences imaginable (e.g., Layne 1990, 1992, 2003). I was amazed and touched by the honesty and forthrightness that many brought to their conversations with me. Reflecting their honesty, in this book I give as much information about patient-mother and provider experiences as possible without jeopardizing individual confidentiality and anonymity. In an effort to increase the anonymity of the medical workers I do not give their exact age; rather I place them in an age range. Holy Names is small enough that knowing a professional’s activities and knowing their age can expose the identity of an informant. Nonetheless, a person’s social, cultural, and economic contexts (among others) affect how they, along with those surrounding them, understand their procedures and experiences. Because each experience is
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unique, it is important to examine fetoscopy interactions within their specific contexts; however, too much detail may threaten confidentiality. To offset this loss, in some cases I alter aspects of conditions and fictionalize components of patient-parent and caregiver stories in this book.13 Although the changes do disguise elements of the experiences offered by patient-mothers and those who care for them, to the best of my ability I strive not to alter themes or particular details fundamental to the individual experience. In an effort to extend as much anonymity as possible, all names in this book (including health care organizations) are pseudonyms.14 Being critically aware of my own politics and emotions, including deciding what I did and did not reveal of my personal life to informants, made me reflect on their political and emotional concerns surrounding my project. I was particularly intrigued that many at the hospital seemed concerned about my studying fetoscopy when they learned that I was married (to a man) and did not have children. Their concerns (particularly those of the fetoscopy nurses) stemmed less from worry that I would not be sympathetic to patient-mothers trying to save their fetus-babies than worry that I would overinternalize fetoscopy stories. Just as nurses worked to keep themselves somewhat distant, so they worried that I would hear too much and forgo children for fear of what could happen. Although many of their concerns reified the position of woman as mother and nurturer, their concern for my psychological and emotional wellbeing was touching, and I found their friendship and support invaluable. Like the nurses, some patient-mothers also worried about the effects of their stories on my personal reproductive decision making. To carry on their concern, I also recognize that readers will be affected by the stories in the following pages. I hope that all who read this, or encounter fetoscopy, see it within its full context of hope and despair and not as either a good or bad event. I was amazed that patient-mothers who suffered their own traumas would express concern over how their stories might affect me (on trauma narratives, see, e.g., Brison 1997). At the same time, they wanted to be interviewed, to get their story “out there,” and would do nearly anything to help bring attention to fetoscopy and the little-known conditions it treats. During my interview with Lucy Dover (who had consented to the tying off of a nonviable fetus-baby to
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help save the other fetus-baby in a twin gestation in 1992), she asked about my family life. When I told her that I was married, she immediately, and somewhat jokingly, broached the seriousness of what I studied and how it might affect my future decision making. Like the nurses, Lucy and others assumed that, because I was married, I would likely have children. She explained that once you know what might happen, it is difficult to ever return to believing that pregnancy can be nonproblematic: Lucy: You’re probably hearing about all these pregnancies and thinking, you’ve been married two years. Oh God, there’s [laughing]. . . . DB: Actually, I have been known to come home and just unilaterally proclaim that we’re not having children, because I do look at the highrisk stuff. . . . Lucy: . . . the counselor there at . . . [the hospital] . . . she said, “. . . if you ever were to get pregnant again, you will not have these problems. It is so unlikely that you will ever have these problems again. Don’t even”—And then when I had called [to tell them I was pregnant again]— it wasn’t even a question not to go to [that hospital] . . . to have the amnio and to have Dr. Wilson do it and what not. I was going to have [the amniocentesis] . . . at another hospital, but with Dr. Wilson doing it. And they said, “No, no, no, we want you here at the hospital. Just in case.” Although the chances of Lucy having trouble with her subsequent pregnancy were as likely as anyone else, when she did become pregnant, statistical reasoning took a backseat to general concern and fear of the past. Like Lucy with her second pregnancy, I realize that the chances of these complications ever happening to me are small; however, knowing that babies are born without heads and twins do die with abnormal circulation, I cannot return to a vision of pregnancy as blissfully waiting for the “little miracle.” The transition of pregnancy from nonproblematic to potentially traumatic affects my willingness to support a highly technical invasion into pregnancy, creating a context in which I may be more willing than others to accept fetoscopy or other invasive reproductive procedures.15 Though I am not a technophile, it is important to acknowledge that following my research, experiencing a “troubled” pregnancy
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is one of my greatest personal fears. I do not know if I would make the choice to undergo fetoscopy, but should I become pregnant, I will likely pursue and undergo other forms of prenatal testing (e.g., ultrasound and amniocentesis), accepting their medical and emotional risks. I am politically, emotionally, and ethically involved in supporting the site and those whom I met. This is not to say that I wish for fetoscopy to develop and expand regardless of intent or effect. Indeed, my investment is not arbitrary: my hope and goal is that fetoscopic procedures develop in ways that are socially and culturally aware. I am investing in the hope that this work, combined with ongoing explorations of fetoscopy elsewhere, will be developed and pursued in ways that are fair, comforting, and mindful of the similarities and differences separating individuals. The following chapters build on this hope to examine both the literature in which fetoscopy is placed and the social interactions that surround its use. As noted earlier, fetoscopy occurs within a larger cultural context. My work highlights the lived experiences of particular individuals. Yet, as Casper convincingly argues, fetal surgery is also a woman’s health issue; and as Rayna Rapp notes, it is difficult to attribute a single medical decision solely to an individual (although individual interviews are also used to support arguments of social theory). The following chapter explores some of these larger cultural assumptions that undeniably constrain fetoscopy decision making. Although the following chapter moves away from the details of the individual, it is important to explore these larger contexts and, at times, the invisible, entrenched cultural assumptions that bear on individual patient-parents and their medical providers.
3 Fetoscopy in Cultural Context: Fetal Politics, Reproductive Choice, Religious Experiences, and Maternal Blame
Fetoscopy affects people differently; however, no one who encounters it will ever be the same. The procedures often alter worldviews and force individuals to come to terms with difficult (sometimes unimaginable) decision making. Whether a patient-mother who will never again see her body in the same light, a physician who is amazed by or hesitant about using such technology, or a media report proclaiming how medical advances allow “miracle babies,” fetoscopy affects us all. My work explores a particular site, Holy Names Hospital. As described in the previous chapter, I came to know patient-mothers and physicians (among others) and developed personal relationships with many of them. However, an analysis that examines only this local level of fetoscopy (i.e., one hospital and the individuals within it) is necessarily limited. Fetoscopy has implications beyond the individual; they extend to the widest social levels, where federal law, abortion politics, and world headlines engage people of varied religions, nationalities, and cultures. Exploring fetoscopy involves a careful and necessary balancing act, overprivileging neither the larger social context in which fetoscopy occurs or the individual woman and her caregivers who experience a particular procedure. Most of my analysis highlights the concerns and experiences of the individual, therefore, it is imperative to underscore the importance of recognizing its larger social context as well. A fair and meaningful analysis of fetoscopy must account for individuals’ needs and acknowledge the power and invasiveness of fetoscopy in Western medical and popular cultures. In her aforementioned work examining open fetal surgery, Monica Casper explores the ways in which the fetus has transformed into a
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patient. She examines the tensions between an individual’s decisions and its larger political manifestations, reminding readers that fetal surgery must occur on or through a healthy woman’s body to reach the unborn. As Casper notes, fetal surgery must be recognized as a medical procedure that builds on current assumptions of appropriate maternal behaviors and continues to shape these beliefs. Fetal surgery should thus not only be viewed as a prenatal procedure, but also as a woman’s health issue (Casper 1998). A social analysis exploring only this level of politics is also short-sighted, however, as it may threaten to marginalize already suffering women by generalizing their experience within larger political battles in which they become faceless, nameless, and all too often, voiceless. Casper’s sociological approach highlighting the larger politics of fetal surgery and my ethnographic examination of individual meanings are not antithetical. They are two ways to examine highly complex medical interactions. As noted earlier, one approach begs for the other to clarify the many views of fetal surgery participants and the many theoretical levels at which medical interactions are analyzed. Although a number of larger cultural issues are brought to bear on fetoscopy decision making at Holy Names, four merit particular exploration: fetal politics, reproductive choice, Catholic ethics and religious needs, and maternal blame. Like a ven diagram, all of these cultural issues converge at Holy Names while women attempt to make sense of their situations. The general invisibility of these issues starkly contrast with their power. As a woman or physician makes sense of a particular pregnancy, she may not recognize that other, less visible factors are also influencing her decisions. The theoretical arenas in which fetal politics, choice, religion, and maternal blame converge is where fetoscopy at Holy Names is best examined to understand the often invisible assumptions that implicitly pressure women and their caregivers to act and react in culturally patterned ways. This chapter explores some of the larger social and cultural concerns affecting fetoscopy development and delivery while also bringing individual experiences into the examination. Fetal Politics Fetal bodies are “materializing” in professional medical cultures while increased public use of fetal imagery has made the fetus a subject of
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popular culture and a potential patient (Morgan 1999). Fetal imagery in public spaces may entrench the in utero entity as an autonomous individual and invite assertions of fetal rights separate from a woman’s reproductive rights.1 Ultrasound and endoscopic images appear daily throughout the United States in a variety of public spaces (e.g., television programming, billboards, and newsprint). Once individuals become aware of the popularity of the fetal image it is often shocking to find how extensively it is used, especially in advertising (e.g., Taylor 1993). The plethora of fetal imagery and increasing public awareness of it leads some to argue that there is a “public fetus” in Western culture (Petchesky 1987; Taylor 1993). Its effect is to view the in utero as a separate entity from the woman who carries it and, in its extreme, as not reliant on and potentially in conflict with her. Noncritical acceptance of the public fetus (i.e., a social abstraction) and the particular fetus (i.e., an embedded, material entity) is achieved in part through the proliferation of fetal imaging technologies. Although viewing a particular fetus may be enjoyable for some (e.g., a woman with a wanted pregnancy), it is necessary to ask what political context underlies such images and how might these politics implicitly and explicitly affect individual women and societies at large (on the ability to “see” a “baby” through ultrasound, see, e.g., Mitchell 1994). The theoretical and political conundrum of analyzing the public fetus and fetal imagery is that it is difficult to examine the effects of fetal visualization without accepting or furthering claims of the fetus as an independent entity and, by extension, claims of fetal rights (e.g., Taylor 1998). As theorists proliferate fetal imagery through social critique, they cannot control its value in public culture.2 The creation of the fetal-patient has depended, in large part, on creating a fetal presence. Increasingly, the fetus not only has become a bona fide patient but has assumed a social role. In many cases, fetal imagery conjures up (or politically forces) the need for protection of the fetus. The salient question is, from whom or what does the fetus require protection and why? As this new patient emerges so too do contexts that offer it medical care. MacDonald, in critically examining this point, states, “By imagining the fetus as a tiny potential patient, more patients are created for doctors to treat—patients that are more interesting, more expensive, more experimental, patients that require specialists”
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(MacDonald 1994:92).3 Fetoscopy creates color images of the in utero fetus. Simply put, it adds to the identity of the public fetus. Ironically, these same images are particularly problematic in high-risk obstetrics, in which fetus-babies are most at risk and pregnancies are most likely to undergo considerable testing and monitoring: the sicker the fetus, the more likely it will be tested and observed. During fetoscopy, two forms of images are created: video and still frame. In all cases at Holy Names, the video of surgery was kept by the physician for ongoing research; however, a second visual, the “snapshot,” was at times shared with the patient-parents. During surgery, the fetoscope relays images to a color monitor (similar to a television set) in the operating room. The monitor offers real-time color imagery of the surgery. The snapshot, however, was more akin to a Polaroid photo in which a single image was captured and printed. While these photos were used for research, in some cases the medical team also gave the photos to the patient-parents as a keepsake of their surgery.4 These photos were colloquially referred to as “baby pictures” and generally contained a fetal profile, hand, or other distinctly humanlike feature.5 Although many patient-parents enjoyed receiving these images, they remained political artifacts that carried assumptions about what a baby is and is not in Western culture. The emotional power of the snapshots cannot be overstated. To illustrate, one day Kay and I had some baby pictures from a surgery. As we walked through the hospital, we saw the patient-mother’s husband. Kay approached him and held out the photos as we walked alongside him. The images so shook him that he stopped immediately, putting his hand over his chest. His eyes widened as he realized that they were photos of his sons, in utero. He was overwhelmed with emotion as Kay told him they were his to keep. He thanked us profusely and hurried off with the photos to show his wife. Like women who joyously bring their ultrasound images to work or tape them to the refrigerator as “baby’s first picture,” this couple proudly displayed the two newest members of their family on their hospital room wall. Sadly, a few months later I received a letter from this couple. Their sons did not survive. Are the photos now a painful reminder of what they lost or proof that their sons did exist? Perhaps the photos now serve as a bit of both (c.f., Layne 2003).
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There are multiple detrimental effects to increasing cultural acceptance of fetal images; at the same time, many of these images offered patientmothers an empowering opportunity to see their fetus-babies as they worked to save them. Holy Names workers and others involved in building public familiarity with in utero images rarely recognized that their individual caring activities (such as giving a desperate patientmother a picture of her developing fetus-baby), while done with compassion, were also political decisions that affected a patient-mother’s construction of her and her fetus-baby’s identities as well as the cultural milieu of their interactions. To affect one is to affect the other. Of the women I met who underwent fetoscopy, those who consented to diagnostic embryofetoscopy offered some of the most traumatic stories of fetal visualization. Little-known diseases, often referred to as “orphan” diseases because of their rarity, are generally unknown to most people and can be difficult to diagnose. Some of these conditions may be inherited while others are not. What they have in common is that they are often difficult to research and find information on their effects. For patient-parents facing these orphan diseases, the National Organization for Rare Disorders, Inc. (NORD) may prove an invaluable informational source. NORD is a nonprofit informational clearinghouse covering more than 1150 rare diseases and offers some patients an on-line community where they can share their experiences. Unfortunately, of the sixteen conditions amenable to diagnostic fetoscopy, only six are covered in the database (Quintero 2002e).6 Not only are these women facing littleknown conditions, but even the clearinghouse developed specifically to help individuals find information on such orphan diseases, syndromes, or characteristics may not list the condition in question. If the adage that you should “do your research” to learn about your health and discuss treatment options with your doctor holds any weight, it clearly fails in many of the conditions that women facing diagnostic embryofetoscopy may consider. At best these women may be left to their referring physician, fetoscopy surgeon, and Web sites that may or may not hold valid data. To illustrate, an Internet search of amniotic band syndrome leads to both any number of Web sites on the medical condition and to information on the band Narcolepsy’s release of the demo album “Amniotic Band Syndrome” in 1993. Although the Internet may prove valuable
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to many, it also provides incomplete and frustrating information to others. Diagnostic procedures are considerably shorter than operative fetoscopy, and a woman may elect to undergo a local anesthesia so she can watch along with the physician as he or she makes a diagnosis. In such cases, women may join the physician as the “reader” of the image looking for the signs that she believes are determining factors for fetal health. Some found being awake and watching the surgery a positive experience in which they could join the physician to bring their knowledge to bear on their pregnancies. Others expressed difficulty in viewing their unborn fetus-babies, as it was never certain that their fetus-babies would survive.7 Although the creation of the public fetus and the possible cognitive disconnect that a particular patient-mother may feel while watching her own surgery should not be underestimated, it is also intriguing that some women find these visuals empowering or liberating when it enables them to consider their position as reproducers and mothers (c.f., Hartouni 1993). Although diagnostic embryofetoscopy and needle embryosfetoscopy differ in their ability to access fetal circulation, they are similar in that both offer highly refined visual diagnoses and allow women to see their embryo-fetus in utero. Here the effects of viewing one’s own fetus converge with an awareness of the public fetus and proved troubling to some patient-mothers. As time passed, Martinez and his research group have started performing operative procedures under local anesthesia. When I returned to the hospital in 2005, I was invited into surgery to see the new equipment. Most of the items remained the same (e.g., the surgical table, the anesthesia cart, and the laser machine) but on peering up, I saw the room had changed dramatically. Monitors had joined the overhead surgical lights. I was informed that the monitors were placed so that patient-mothers could watch their surgeries. To better understand the approach, Martinez invited me to sit in on the surgery. I agreed. Once the patient-mother was taken to surgery and prepped, I entered the room. Immediately, I realized that she could not see the video monitor, nor could she hear the physicians. Although she was awake, calming music filled headphones covering her ears, and a mask blocking the glow of surgery covered her eyes. It was not until the end of surgery that
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Martinez and his surgical team removed the devices covering this patient’s eyes and ears, allowing her to hear the physicians speaking and watch her fetus-baby on the monitor. I later learned that the decision whether to view the surgery was the woman’s. In this case the patient-mother decided not to watch or listen to her surgery. Other patient-mothers did watch the monitors during their surgeries. Annette Palatine, was 29 in early 2005 when she underwent surgery for twin-to-twin transfusion syndrome (TTTS); I interviewed her in September of the same year. Her memories as a new mom were quite clear, and she told me a great deal about the most recent iterations of patient care. She told me that she had watched her surgery, and I asked her to elaborate: what was it like to watch? She explained: It was weird because I was really sleepy and they kept telling me “oh, you’ve gotta watch this, this part’s cool!” And I was like okay, I’ll watch it on the screen. And it was really different. It didn’t seem real, that it was my body I was looking at. But it was just neat to see . . . you know, they were able to show me my babies . . . I watched them while they were doing it but I didn’t really know what they were doing while they were doing it. But then afterwards they were going through and showing me this is the fingers and the eyes and that was really cool. And then having the pictures. They printed out pictures for me and that’s something nobody has, you know? I’m like yeah, they were inside my uterus and took pictures of my babies. That was pretty cool.
Being awake not only allows some women the option to watch their fetus-babies, but importantly, also allows them to watch what is occurring in the operating room. Monica Estes was 28 in 2004 when she underwent laser surgery for her twin sons suffering from TTTS. She was awake during surgery and remembers the images. Yet, the procedure is not all she remembers. As we spoke she mentioned something that I had not heard before: her attention turned to the physical structures in the surgical suite and the portable emergency tables suited for preterm, ill, babies. The tables stimulated thoughts of the possibilities that, should a complication arise, the surgical team may need to deliver her babies, who would likely not survive. She explained the fear: Being in the O.R. and being awake and watching and seeing my babies, who were stressed but still fighting as hard as they could on that video screen was just such an amazing emotion. But yet at the same time . . . I saw the two basinets sitting there in the event that I would miscarry, you know, they were too young
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gestationally to save, and I knew that. It was just a very emotional and heart wrenching time.
The emotion aroused by seeing her in utero children on the monitor balanced with the pain of realizing how serious the condition was and how the surgical team needed to prepare for the worst case—the emergency delivery of her babies. In some cases patient-parents found fetoscopic images and other visualization technologies empowering entrances into their pregnancy experiences; in other cases, the images created a new paradox in which hope for a successful birth simultaneously included the pain of perinatal loss (c.f., Taylor 1998). For example, following fetoscopy, some patientparents had difficulty viewing follow-up ultrasounds. Especially in cases where a single fetus of a twin pregnancy died during surgery, follow-up ultrasounds proved particularly traumatic as patient-parents view an image that no longer moves. It does not look the same; it does not look alive (for a detailed analysis, see chapter 6). For all the good intentions of its practioners and supporters, accepting fetoscopy is to support the ever-increasing role that visualization plays in reproductive medicine and its corollary, to allow room for its widespread use and increasing familiarity in public spaces. The Rhetoric of Choice Western notions of pregnancy often rely on and build upon two assumptions: “normal” pregnancy should develop within a predictable timeline and reproductive technologies are “normal” parts of pregnancy experiences. Within these medicalized pregnancies, prenatal tests and procedures have slowly crept into the consciousness of many women and assumed an accepted role within pregnancy experiences. In this view, pregnancy can be anticipated, and when necessary, altered. For example, labor and birth are hastened or slowed with drugs and procedures including cesarean sections and episiotomies. Although many women, their supporters, and caregivers may welcome these and other procedures into their pregnancy experiences, the procedures reify the prevailing medical view that pregnancy can be altered to fit the assumed course of a normal (and in some cases safer) pregnancy trajectory. Although not all women
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agree to undergo prenatal testing, and not all physicians recommend it, the general use of these procedures is accepted by many. Unfortunately, while these tests may offer wanted information, few of them offer a treatment option to fix an ailment. The implications of entrenching a particular cultural assumption of pregnancy acceptability (including outcome) are clear when reviewing the laws and policies surrounding and limiting a woman’s choice within her pregnancy experience. A hallmark of Western social and political philosophy is that individuals are granted rights and choices.8 When considering a woman’s ability to choose a prenatal procedure, it is assumed that at any point in her pregnancy she has the right to choose whether or not to undergo or partake in a specific experience. Yet this political ideal is questionable. Already, women have been forced to undergo invasive procedures such as cesarean sections against their will (Kolder et al. 1987). If claims of fetal rights continue, it is possible that other legally sanctioned invasions on a woman’s body may continue and possibly increase. Unfortunately, the rhetoric and political assumptions of free choice does not reflect the lived experience of pregnancy in which a woman, her in utero entity, and surrounding social context may be at odds in determining what is best or right for all involved in the pregnancy (e.g., Rapp 1999).9 Also implicit in this cultural (scientistic) context is the assumption that informed or educated women will support an approach that assumes pregnancy to be an unusual state meriting monitoring and medical intervention (e.g., she undergoes prenatal checkups, takes vitamins, and may partake in ultrasound exams). Cultural assumptions of the mother as nurturer or protector make it difficult for women to refuse prenatal testing or not behave in ways that are assumed to be proper pregnancy behaviors (e.g., Michaelson 1988; Rapp 1999). Equally confounding is that once a woman undergoes monitoring and testing, it may be difficult for her to choose against future tests offering further insights or refining previous diagnoses.10 Use of prenatal technologies (including ultrasound, which is often thought of as a joyous family event and not a medical procedure) may lead to a virtual conveyer-belt in which one procedure begets another. Even when reproductive technologies are touted as increasing women’s “choices,” it is not clear that the information gained makes the
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reproductive decision easier (e.g., Lippman 1992; Rapp 1999; Rothman 1986). For example, some tests include a lengthy anxiety-filled waiting period before women receive results, and whether or not women have waited test results may not offer information that women need, such as indicating the severity of a fetal condition, or offer insights into how their community may react to a future child and potential mother (e.g., Rothman 1986).11 Choice suggests a wanted choice and assumes the option not to undergo testing. The rhetoric of choice in reproductive decision making is problematic. Stressing choice as a form of empowerment obfuscates the emotional work of making the decision (Rapp 1999). The assumption that a woman is “free to chose” what tests to undergo is further problematic in the context of U.S. genetics and eugenic social concerns (e.g., Asch 1994; Landsman 1998; Rapp 1999). Disability rights scholars are concerned that prenatal testing could promote a new eugenics in which pregnant women may be pressured to terminate “nonperfect” or sick fetuses (e.g., Landsman 1998; Rapp 1999). Many social theorists are particularly critical of the new genetics and fetal imaging technologies that may serve as technologies of quality control. Fetoscopy, in both its diagnostic and operative manifestations, is a reproductive procedure that may be used implicitly and explicitly for eugenic purposes. To illustrate, two nurses at Holy Names had different concerns surrounding fetoscopy and eugenics. One nurse feared that by allowing sick fetuses to survive, fetoscopy may play a role in passing on “weak genes,” which may not be appropriate. A second nurse, felt that using fetoscopy to terminate a disabled fetus would be inappropriate. While one feared that fetoscopy could be used to keep sick fetus-babies alive, the other feared it would be used to terminate them. In both cases the nurses felt there was a right and wrong use for the procedures and its connection to eugenics was clear, but disagreed over what that eugenic purpose might entail. Medical reports of developments in fetoscopy do suggest a future that some may view as eugenic. Currently, as a diagnostic procedure it can be used to identify rare genetic conditions and offer patient-parents the opportunity to terminate at an earlier stage of pregnancy. As a therapeutic procedure it may also be used to minimize some forms of in utero
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damage (though not necessarily genetic) that will make disability a rarer state for some. As noted earlier, an often suggested use for fetoscopy in the future is perhaps its most eugenic: to access embryofetal blood and deliver gene therapy (e.g., Reece et al. 1994, 1997). If in utero therapy comes to pass, fetoscopy may be one of the procedures to deliver it. Individual choice to pursue such a procedure implicitly builds social values mediating the meaning of disability and difference in a larger cultural milieu. Choice and its implications are both individual and collective. The notion of choice and fetal politics must also be surveyed in the context of its economic value. The patient-parents I interviewed had access to fetoscopy; however, just because people can afford the procedure does not mean they will pursue it, and others who want it, may be unable to afford it. This latter group is ultimately left to other less costly procedures, some of which carry higher rates of fetal impairment and loss (e.g., Hecher et al. 1999; Ville et al. 1995). This situation leads some fetoscopy researchers to argue that medical monies and efforts, and by extension public awareness and policies, are currently directed toward technologies that are not as effective as fetoscopy and that pursuing fetoscopy as a viable obstetrical tool would be a more appropriate course for medical policy and technology development (Hecher et al. 1999:723).12 Depending on the interests, assumptions, and approach to a critique, the decision to pursue fetoscopy can be considered both economically worthwhile and wasteful. Proponents of fetoscopy might argue that the approximately $20,000 procedure to save a fetus (more fetuses in multiple gestations) is an acceptable expense because it saves the fetus today, and may reduce future medical expenditures necessary to care for an ill baby who received no in utero treatment. Opponents may counter that fetoscopy might also save a fetus that will require expensive hospital stays and further medical treatments. In my interviews I found situations supporting both arguments. Some women had perfectly healthy children following surgery, while others had children with special needs (some of which required expensive medical treatments and equipment to keep their child at home). To illustrate the later case, Ramona Emerson, a 28year-old mother with two surviving sons following her surgery for TTTS in 2002, explained that attending to her sons’ medical needs (both have
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cerebral palsy) on a daily basis is a full-time commitment requiring her to learn how to care for them and ensure that she can get them to their therapy appointments and to conduct therapy at home. Although she is happy to have her sons and feels it is the right thing for her life to focus on her sons and their medical needs, their condition has dramatically changed how her family interacts with the world around them. Ramona’s activities outside the house generally fall into three areas: taking her sons to therapy, attending a moms’ group, and taking the family to their very supportive church. Aside from these trips, Ramona stays home and makes certain that her sons receive the daily therapy needed for potential improvement. Although her sons continue to require medical treatment, cases such as this demonstrate that additional, emotional work or personal expenses may be an accepted part of a child’s survival. Fetoscopy is financially worthwhile to only a limited population; however, the potential advantage to this group may be invaluable (e.g., saving wanted fetus-babies). On the other hand, it is undeniable that the resources used to develop fetoscopy would have a larger, immediate effect on more people (including saving wanted fetus-babies) if they were used to support other low-tech interventions and investigations such as teaching healthy maternal lifestyles and offering prenatal care to all. Proponents of fetoscopy also look beyond its potential good for a particular pregnancy and argue that its continued development spurs advances in prenatal care that saves a larger number of wanted pregnancies and lowers overall medical costs (e.g., Hecher et al. 1999). With insights gleaned from fetoscopy investigations, medical researchers are theoretically better positioned to address other reproductive ailments. For example, an unintended consequence of working with fetoscopy for one research group was discovering where and how amniotic membranes rupture (a significant cause of preterm labor). Using these findings, they developed an in utero procedure that potentially fixes the problem (Quintero 2002f; Quintero et al. 1999). In this vein, some proponents support fetoscopy not only for its potential to alleviate specific troubled pregnancies today but also for its legacy in the fields of obstetrics and perinatology. Ultimately economically based arguments for increased social support are not compelling, and promises of technological spinoffs cannot be guaranteed. Economic arguments must be considered along-
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side the effects of fetal visualization and the rhetoric of choice to understand the larger context of fetal politics. Catholic Ethics, Religion, and Scientism The moral values placed on fetoscopy decision making are informed by a number of cultural assumptions and underpinnings. Class, race, and gender all enter into fetoscopy decision making, as does the ability of different people to negotiate the aforementioned assumptions of fetal politics and individual decisions. However, particularly intriguing cultural arenas to explore fetoscopy decision making in are religion and larger belief systems. At Holy Names, fetoscopy is a procedure that lies not only at the intersection of life and death, but also within an institutional manifestation of religious doctrine—a Catholic hospital. Holy Names Catholic directives are clear: it is a pro-life hospital existing within the Catholic tradition (e.g., once a year its employees may select to attend a service to bless their hands). Although Holy Names is Catholic, not all its staff or patients are Catholic, and not all support its pro-life position. As a Catholic hospital, Holy Names’ use of fetoscopy is both clear and confusing. The hospital’s environment, politics, and moral assumptions affect the willingness of medical professionals and patient-parents to support its current and potential uses of fetoscopy. Surgery to save fetuses is a pro-life activity: the goal is to assist a woman in carrying her pregnancy to a point that she can give birth to a viable baby. Some may see such activities as potentially sidelining the patient-mother as a cost of helping the unborn (c.f., Casper 1998). Yet this standpoint is only one aspect of fetoscopy within a pro-life, Catholic tradition. Each procedure comes with a varying degree of difficulty aligning fetoscopy with a pro-life stance. Fetoscopy is used at Holy Names in four ways: in diagnostic procedures, operative procedures on a single fetus, operative laser procedures, and operative ligation procedures. Each approach is distinct and encompasses a variety of issues of Catholic ethics and individual decision making. Diagnostic fetoscopy is a fairly straightforward prenatal technology designed to diagnose an in utero anomaly. It is not utilized (at this point
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in time) for genetic therapy (at least not at Holy Names). It is similar to other prenatal technologies that provide information for women and their caregivers to make decisions regarding the continued path of their pregnancies. Like amniocentesis (which it is sometimes compared to in medical literature), diagnostic fetoscopy can produce useful information on the condition of a developing fetus. From the moral stance of the Catholic Church, accumulating prenatal information is not inappropriate; however, such information cannot be obtained with the assumption that termination is a possible outcome. As journalist Sophie Boukhari states in her article comparing Catholic, Protestant, Buddhist, Muslim, and Jewish doctrines on genetics and the embryo, Catholic doctrine is the most stringent regarding prenatal genetic testing. Describing the late Pope John Paul II’s strong stance on prenatal screening and its potential outcomes, she explains, “Pope John Paul II has repeated it several times, notably in the encyclicals Veritais Splendor (1993) and Evangelium Vitae (1995). These have resulted in a number of prohibitions: ‘no’ to prenatal screening if it is done with the thought of a possible abortion and ‘no’ to most research and therapy on embryos” (Boukhari 1999:24). What a woman selects to do with the information gained from her surgery can be an issue at Holy Names. Though the assumption of the hospital is that she would not make the choice to terminate, and that the procedure was not conducted in an effort to lead her to termination, there is the undeniable possibility that patient-mothers may take their information “off site” and make choices, such as termination, not condoned within the Catholic hospital. As procedures separate from individual patient-parent interests, diagnostic approaches do not challenge the politics or values at the hospital. A vast number of surgeries are conducted on single fetuses, including identifying an in utero lesion threatening the health of the fetus and removing blockages that threaten the fetus’ continued development. In these cases, the hope is to save the fetus and there is little conflict with Catholic doctrine. However, if the surgery cannot alleviate the condition, a woman may, again, seek outside services to terminate the pregnancy. The Church accepts (though mourns) a failed surgery, but not a decision to end the pregnancy. The assumption of the Church is that God determines when and how the pregnancy will end.
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Operative fetoscopy on twins may be used in one of two ways: laser surgery or ligation. The former is perhaps the least worrisome in the Holy Names context. Laser surgery is designed to separate twins experiencing disproportionate bloodflow through a shared placenta. The hope is to recreate the in utero environment in such a way that both fetuses can survive. No other intentions are permissible; though not all surgeries are successful, and fetuses do die, that is not the desired outcome. Laser surgery is designed and offered with the intention of saving both fetuses. Unlike laser surgery, ligation presents women, their caregivers, and hospital administrators with a multitude of theoretical, moral, and emotional confusions. Unlike cases of developing twins sharing blood disproportionally through a common placenta presenting for laser surgery, with ligation one fetus or in utero entity is deemed nonviable or cannot be saved. In these cases, physicians identify the umbilical cord leading to the nonviable or dying fetus in the womb, and with miniaturized surgical tools, tie off or disconnect the umbilical cord, leaving the placenta to the viable fetus. Separating ligation from abortion in the context of pro-life, Catholic ethics is tricky, yet made possible by Catholic doctrine of double effect. Some patients and caregivers are confused to find a procedure that separates the umbilical cord connecting a woman and her in utero entity having any place within a Catholic context. Administrators and other leaders at Holy Names (including clerical leaders), however, contend that the Catholic doctrine of double effect allows for this measure when one fetus-baby is clearly dying and its twin can still be saved. They contend that the surgery is not intended to end the life of a dying fetus-baby (e.g., fetus A), but to save the life of a struggling fetusbaby (e.g., fetus B). Bioethicist Ronald Munson describes the doctrine of double effect succinctly: “The principle holds that . . . an action should be performed only if the intention is to bring about the good effect and the bad effect will be an unintended or indirect consequence” (Munson 1992:27). The point linking ligation with this doctrine is that though one fetus may not continue to develop, that is not the intent of surgery. Nonetheless, some hospital workers do not accept double effect reasoning, and still others are not aware of the doctrine; yet its existence is crucial to creating local policies that enable women and their
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caregivers to pursue some forms of fetoscopy and shape pregnancy experiences. Although the doctrine of double effect has existed since the MiddleAges only recently, and following five years of debate, has it appeared in its contemporary formulation as accepted by the National Conference of Catholic Bishops in November 1994 (O’Rourke 1998). As noted earlier, the doctrine indicates that although killing is immoral, if a death occurs as a secondary effect—an unintended effect—of treatment to an ill or dying entity, it is acceptable. Philosopher Camillo C. Bica explains that “by focusing upon the moral significance of intention and its relevance to moral agency and responsibility, it morally distinguishes ‘accidental’ killing from murder, claiming that only the latter is prohibited” (Bica 1999:131). By invoking claims of intent of surgical outcome, a ligation procedure is separated (at least in Catholic doctrine) from the act of abortion. One of the greatest difficulties facing women consenting to ligation of a twin is coming to terms with two issues: first, that the method most likely to ensure a live baby is to tie off an umbilical cord (a symbolic artifact of pregnancy); and second, that tying off the umbilical cord is not abortion. Though no mothers I interviewed verbally equated ligation with abortion, the similarities are striking, as are the theoretical implications for women facing such moral decision making and its consequences. In an examination of grieving the wanted child, sociologist Aliza Kolker and demographer Meredith Burke explain that “Unlike other perinatal losses, in . . . [the cases of chosen abortion following identification of a fetal abnormality] parents must take active steps to bring about the death of their baby; they ‘play God’ ”(Kolker and Burke 1993:520). For women facing fetoscopy and ligation, the moral stakes involved are further problematic: choosing to save a fetus-baby also entails choosing to lose a fetus-baby. One choice cannot be made without the other, putting the women in a double bind: from one perspective they are caring, nurturing mothers; from another, they are not. The doctrine of double effect offers a simple answer to complex issues. Philosopher Nancy Davis explains that the use of the doctrine has been criticized by “secular philosophers, moralists, and legal theorists . . . [footnote],” yet even so, many secular and nonsecular theorists demon-
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strate an increasing interest in the doctrine, and much confusion surrounds its appropriate use (Davis 1984:107). Although larger debates as to the doctrine’s usefulness will no doubt continue for centuries to come (as it has since the Middle Ages), for the parameters of this work, what I witnessed in the hospital was that the doctrine of double effect theoretically alleviates the Catholic Church or hospital from any “blame” in further traumatizing grief-stricken women. Nevertheless these women are left to struggle to justify their decisions within a larger cultural context that clearly equates the tying off of an umbilical cord with “killing” a fetus. Within this milieu, women face their own moral uncertainty as they attempt to make the best decisions they can. Although consenting to ligation with the intent of saving a fetus-baby made ligation acceptable to Catholic doctrine and some patient-parents, it was rarely unproblematic and could lead to maternal blame. Many patient-parents struggled to free themselves from the implications of being seen as a person who ended a wanted pregnancy. Some, however, also found comfort in the fact that ligation was offered at a Catholic hospital. The cultural narrative that places Catholicism squarely within a pro-life doctrine helped them view, and in some cases justify, ligation as a last resort that a caring moral patient-mother could and should undergo to save at least one baby. Yet, though patient-mothers consent to fetoscopic ligation, it does not diminish the pain that accompanies the loss of a wanted pregnancy (e.g., Rapp 1999). From one perspective, the doctrine of double effect makes it easier for these women to survive their decisions; from another it offers a confusing and contradictory statement on the morality of active parental decisions in traumatic events. As noted previously, the most obvious and tenuous religious issue related to fetoscopy decision making surrounded a patient-mother’s consent to ligate an umbilical cord. Not only did Holy Names patientmothers have to pass an ethics review, in which a handful of Holy Names professionals debated the medical merits of the case, but they also had to determine what ligation philosophically entailed and how it might be related to termination. Both to make sense of the procedure and to separate it from termination, some patient-parents and medical workers used analogies such as turning off life support to a dead or dying
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fetus when considering ligation. Life support held two important ethical meanings: it let one fetus-baby “go” and at the same time used “heroic measures” to save another fetus-baby. Ligation accomplished both tasks. Whether or not patient-parents were Catholic, relationships with clergy and/or God affected some decisions over whether or not to consent to fetoscopic procedures. During our interviews many individuals indicated that they had a religion, but explained that they practiced it in their own way and did not attend religious services regularly. For others, religion was an important factor in their decisions to undergo fetoscopy, and pastors and faith communities figured prominently in their narratives. When deciding whether or not to undergo a procedure, religion entered into the process both in seeking permission (“May I?”) and, more reflectively, in seeking explanation (“Why me?”). Both these questions and their answers shaped the fetoscopy experiences by structuring patient-mother contexts, which in turn shaped their interactions with Holy Names professionals and ultimately shaped fetoscopy itself. Some patient-parents relied heavily on church and cleric acceptance before consenting to ligation and other procedures. Patient-parents who were deeply religious or practicing their faiths often met with clergy to discuss their decisions, and most found this interaction supportive. In two cases that I witnessed, out-of-town patient-parents met with local pastors of affiliated churches before undergoing surgery. These clergy came to the hospital to be with their respective church members. More likely than meeting with local religious leaders, patient-parents met with their own spiritual advisors before traveling for surgery. When I interviewed Margaret O’Brien in 1997, she was 35 years old. She had gone to Martinez in 1992 for ligation of one of her dying twins. Margaret explained that her church and pastors were supportive of her decision to undergo ligation and she thought she was lucky to have such an understanding network: I’m just lucky that I didn’t have a religious or a cultural belief that would have chastised me for that decision. You know? And there’s people that do—that are chastised, or that are frowned upon, or not supported in those decisions by people like in their church or in their community, or whatever . . . I feel pretty lucky that I had that support . . . and that’s probably why I go there to begin with, right?
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In supporting her decision to undergo fetoscopy, her church also supported the Western medical assumptions on which it is based. Returning to Ramona Emerson, the mother with two sons with cerebral palsy, she explained that an important factor in her surgery was a prayer chain that members of her home church started. According to Ramona, members of her church knew the precise time that her surgery was to start. These individuals then contacted others and told them about Ramona’s situation. Through phone calls Ramona’s prayer chain spanned her hometown and state, and even crossed countries. The plan was for everyone to begin praying for Ramona and her twins at the same time, thus offering a loud spiritual cry for assistance. In fact, her prayer chain was so immense that Ramona believes she could “feel it” and it was the prayer chain that kept her calm while others in her family were anxious. She explained: I mean we relied a lot on our prayers, our friend’s prayers, our family’s prayers, our church prayers. . . . there is a prayer chain at our church, and it’s I call you, you call them, and it is this prayer chain. It had reached to other states, other countries, and because different people that we knew were all starting these prayer chains through their different churches, and they are in different towns, different states. When I went to have my surgery, you know, I’ve said everything happened so fast. You really don’t have a lot of time to be scared. When I was at the hospital, you know, they were prepping me for surgery and everything. . . . everybody . . . [was nervous], but I wasn’t. I told my husband, because I knew that that prayers were starting at a certain time for us. I told my husband, I was like, “I can feel it. I don’t have any nervousness.” I hadn’t even been drugged yet. I couldn’t say that it was because of all of the medication that they had given me. I just felt at that time I could feel all of the prayers, everyone’s love, and I was at peace. I knew that everything was going to work out the way it was supposed to. Not necessarily the way I wanted it to, but the way that it was supposed to.
With the prayer chain, Ramona was calm and better able to accept the surgery and its potential outcomes. When patient-parent decisions and experiences were not compatible with clergy wishes, the results could be devastating. In 1997, at 44 years old, Mary-Beth Brown had suffered two miscarriages and lost an acardiac twin (the viable fetus died as well) before finally giving birth to a healthy baby. When Mary-Beth was diagnosed with her acardiac twin (one fetus lacked a heart and head; see chapter 6 for a detailed explanation), she underwent ligation. Her minister did not agree with the
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procedure and believed that it was abortion. Mary-Beth explained that the acardius would not live and that the viable fetus-baby would die if something was not done. The minister was unswayed and would not support her decision, visit her in the hospital, or offer any spiritual guidance. While Mary-Beth was firm in her convictions to undergo the procedure she remained devastated by her minister’s (in)action and lack of support. Abandonment by a God, one’s faith, or a representative of that faith, occurred not only because a woman consented to a procedure that was deemed unacceptable but also because her social network altered in such a way that she physically could not attend worship services. For example, at 26 years old, Amy Edwards underwent ligation on her acardiac twin in 1995. Following surgery she was on bedrest and unable to attend weekly Catholic Mass. After her surviving baby was born, she went to her church and asked that her baby be baptized. The priest was hesitant and observed that he had not seen her at church for some time. When she explained that she was on bedrest and could not attend services, the priest was unmoved and he told her that he would not baptize her baby until she resumed attending services. Amy described the encounter: “our monsignor at the catholic church is very old. And um, we had problems with him when we wanted to get . . . [the baby] baptized . . . . When we called to get him baptized he said, ‘I haven’t seen you’ in so many months and whatever, and we had to go to church for a couple of months before he would baptize . . . [the baby].” After attending services regularly for some time, the priest baptized her baby. The child was seven months old. Following bedrest and anxieties surrounding the health of her developing baby, Amy continued to find conflicts with her religion after the birth. Religious contexts influenced whether women would consent to surgery, and the reaction of the church or religious community following procedures shaped their experiences within their life narratives. In some cases, religious contexts offered comfort and direction; in others it created angst, and deep-rooted pain. Some feared that God had abandoned them; others grew closer to God. Some even found themselves in the tricky position of needing to believe something they had not prior to their traumatic diagnosis. As one 40-year-old agnostic father explained to me only days after one of his daughters was ligated in the
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couple’s efforts to save her sister, he prayed to a God he didn’t know existed to save the babies. If He saves them, what then? Indeed. What then? What obligation is there? Or is there an obligation? The God to which this father prayed did not save his babies. At best, God would only save one. Fetoscopy decision making can lead individuals to adopt beliefs they never imagined or accepted prior to diagnosis. It is short-sighted to dwell too much on religion as a basis or explanation for patient-parent decision making without locating it in their sociocultural context including Western, scientistic epistemologies (that also entrench fetal politics). During highly emotional fetoscopy decision making, some patient-parents stressed the usefulness of their scientific or medical backgrounds to make decisions. One couple explicitly drew from their scientific education to understand their situation (this may also be said of a handful of patient-mothers who worked in the health care industry, although the degree to which rationalistic or scientistic reasoning entered their narratives may have been less). For 34-year-old Carole Daniels and her husband, Craig, physics and mathematical probability figured prominently in their decision to undergo fetoscopy for TTTS in 1997. Drawing from a scientific metaphor of a closed, uneven pressure system existing between her dying twins, Carole identified her situation in terms of statistical probability. She explained that her decision was a rational one based on complex chemical and physical imbalances. Carole and Craig sought equations, scales, and measurements to understand the complex biological interactions of her pregnancy; unfortunately, no such detailed statistical evidence existed. Lacking this information, Carole nevertheless found it helpful to analyze her pregnancy with scientific reasoning. She explained, “Because I’m a . . . [scientist], and because everything’s an experiment to me, we have to create these . . . medical situations into an experimental base so that you can put them into a statistic.” With minimal scientific studies and immense reasoning, she believed that she and her husband could make the best decision possible. Not only did patient-parents use scientific and medical reasoning and knowledge, but many stressed the importance of their education and ability to think critically and rationally about their circumstance. Most fetoscopy patient-parents had some level of education beyond high school, and many held a college or advanced professional degree. Even
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though patient-parents often relied on physician and religious guidance, few did so blindly. As noted earlier, Mary-Beth Brown’s decision to ligate her acardius led to a rift between her and her minister. She confronted her minister, imploring him to understand how she felt about ligation, but no matter how much she tried, her minister, would not accept her decision. She said “he just couldn’t be a part of what I’d done. And it was very hurtful, because I felt like, we’re well educated people. We know what we’re doing. It’s my decision.” Although Mary-Beth was well informed and felt that ligation was her best option, her minister’s stern reaction and rejection left her feeling abandoned. In some cases, religion and scientism merged in a symbiotic relationship between a powerful caring God and an informed, faithful individual. In these cases patient-parents and others saw their role as working to make God’s miracles possible. Though many believed God could intervene in their pregnancies, He would not do so unless asked. Whether through prayer or seeking help at a fetoscopy center, some patientparents believed they had to do their work to help God do His. One of the saddest cases that I witnessed was that of Yolanda Montana, a 36year-old woman with twins suffering from TTTS. While sitting beside her bed on the night before her surgery, she explained her feelings about God’s role in giving her sick babies, “God, as much perfect as he tries to be—things just slip around the side.” As I listened to Yolanda’s tearful story in her dimly lit hospital room, it became clear: God did not decide to give her sick babies, He simply forgot to give her healthy ones. Now with fetoscopy, she had the ability to fix God’s mistake. After all, He did not mean to do this to her babies; it was an accident. In this light God was not infallible, and faithful disciples needed to help Him to help them. In 1997 I met Stephanie Bacon, a 41-year-old patient-mother, and her husband, Wayne. The Bacons were devout Protestants who were seeking treatment for their in utero sons battling TTTS. After her surgery, I met with them in her hospital room. Similar to Yolanda’s belief that God was not infallible and that she could and should work to fix His oversight, the Bacons similarly reflected on the importance for action by God’s faithful to achieve His miracles. They needed to do more than pray; they needed to help God. To illustrate their point, the couple compared their situation with a man who wanted to win the lottery:
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Stephanie: There was something on TV or an article that we both had seen—that was like this guy prayed to win the lottery for a whole year— kept praying, kept praying, kept praying but he never bought a lotto ticket. Wayne: He never won the lottery, but he never also bought a lottery ticket. Stephanie: Right. And so how I look at it is, you can pray, you can pray, and you can pray, but you can also do things to make things work in your prayer. Wayne: Or you have to— Stephanie: Right to help, you know. And God is putting those resources in front of you—that’s how I look at it—to make that happen. Traveling for surgery and undergoing a new procedure was, in some respects, embodied prayer or hope cast by desperate, faithful family. Belief systems including science and religion form the ontological context in which patient-parents and their providers negotiate fetoscopy. In this light, Catholic directives and hydrodynamics are both guiding forces in fetoscopy decision making. Each is important and serves to create order out of an otherwise chaotic situation. Which framing individual patient-parents and caregivers used varied; however, each person brought a variety of issues, frameworks, and assumptions into individual decision-making processes. Often when God, religion, or spirituality was mentioned it was not contrary to science or medicine, but was either a partner to science or even implicit to science, investigation, and medical discovery (on the intertwining of Western religion and science, see, e.g., Wertheim 1995; on religion and pregnancy loss, see, e.g., Layne 1999a). Some positioned science and religion as similar, if not complimentary to each other.13 Religious and scientific explanations and justifications are statements of social order. If an interviewee located her decision within a religious or scientific context (or a merging of the two), each serves the individual by creating a philosophical arena through which theories of how the world works were understood and thus shored up her decisions with justifications. Generally cast as antithetical, often scientific and religious explanations merged in the emotional, invisible work of fetoscopy decision making.
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Where distinct differences lie is in the Catholic doctrine of double effect. Women and their caregivers not only work through their own spiritual beliefs and emotional concerns with this doctrine, but awkwardly must also form these highly personal understandings within what may seem a very cold, unyielding doctrine that separates ligation from abortion but does not address the cultural nuances of what it means to kill a fetus-baby that all patient-mothers undergoing ligation face. While the doctrine of double effect made ligation possible at a Catholic hospital, it did not diminish the pain patient-mothers felt and, at best, only served as a religious justification to ease the grief-stricken women. Maternal Blame and Failure Losing unborn fetus-babies is a difficult experience for any parent. Often issues of guilt or other anxieties fill a patient-parent who longingly wishes to hold a baby that will never grow into the child imagined. One grieving mother confided that she had “aching arms” that would subside only if she was holding a baby, and another referred to the “ghost kicking” she continued to feel as “unfair reminders” of the baby she had lost. Particularly in Western cultures, pregnancy loss unfairly alludes to maternal responsibility (i.e., she should be able to care for her fetus-baby) or irresponsibility (i.e., she behaves in a way antithetical to caring or nurturing motherhood) during a troubled pregnancy (e.g., Rothman 1986). Just as personal responsibility for disease has increased, so has personal responsibility in childlessness (e.g., Sandelowski 1993). For those who desperately desire a baby and suffer pregnancy loss, to live within a sociocultural context that blames them is tragic. Taken together, maternal blame and maternal failure are painful experiences within a context that presupposes personal responsibility for health. Accusations or feelings of maternal blame or failure often surround loss and are problematic in some fetoscopy cases; patient-mothers may be blamed for not pursuing intervention just as they may be blamed for pursuing it. How individuals react to patient-parent decisions and pregnancy outcomes may affect whether or not or to what extent a woman who loses a fetus-baby may blame herself or see her body as failing her. Following metaphors of (re)production in which a healthy baby is the final product of a woman’s labor, it is difficult to reconcile an ill or dead baby with
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the desires and expectations of a wanting mother (e.g., Landsman 1998; Rothman 1986). Mary-Beth Brown, who ligated her acardius, critically and somewhat embarrassedly explained that she “felt like my body was betraying me.” If getting pregnant and having a baby was supposed to be so natural, why couldn’t she do it? Not only might a woman see her difficult pregnancy as a result of her body failing her, but that blame may also be heightened when she is unable or unwilling to take on patient roles or limitations to help bring the pregnancy to term. For example, when a woman’s amniotic membranes rupture (a possible side effect of fetoscopy), she may be placed on bedrest. Most patient-mothers found bedrest difficult; it is boring, frightening, and anxiety ridden. Women must leave work, stay off their feet, and in large part give up enjoyable activities (such as other childrearing) that may forge their identities. Women in this situation come head to head with the emotional, psychosocial traumas of failure, blame, and ultimately guilt: she may feel or be told that her body has failed and if she is unable to hold to a bedrest regime, she may again be blamed for causing further harm to her fetus-babies. Taken together, the loss of control over her body and pain from blame leads to considerable malignant guilt. Some patient-mothers were particularly concerned about the guilt of being linked to the death of a wanted baby by not following their doctors’ orders. When Collette Stockton’s membranes ruptured following laser surgery in 1998, she was placed on bedrest in an effort to help her membranes seal. Collette was in her mid-30s and her husband and mother made the trip to Holy Names to support her. Collette was desperate to save her struggling sons. My grief for her situation still haunts me. Perhaps more than most, her eyes continually showed a mixture of hope and fear. I was in her room when Martinez and one of his partners came to see her. Collette was anxious about the leaking amniotic fluid and feared for her babies. After some discussion, Collette told the physicians that she would willingly be catheterized if they thought that would be best; she would stay in bed and not use the bathroom or any other facility. She would remain absolutely immobile to save her sons. The physicians agreed that although bedrest was necessary, catheterization was not, and they would continue to monitor her pregnancy. Although she did eventually leave the hospital and return home, she went into preterm labor and lost her sons.
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Another patient, Helena Lawrence, who had surgery two years prior to Collette’s (in 1996), was also extremely worried that she might harm her struggling fetus-babies. After her procedure, she too experienced amniotic fluid leakage. She explained that because her pregnancy was delicate, she had to be very careful not to upset it. Bedrest was particularly important because she felt that being up and moving around would potentially contribute to the death of her fetus-babies. Although Helena wanted to cry and be upset, she feared that sobbing or hysterics might prove dangerous to her delicate womb and developing babies. During our 1999 interview, she expressed these feelings that “If I’m up and moving around . . . I am contributing to their death,” and “if I cry I’ll kill my babies.” Helena’s fears were many—walking and crying; above all she did not want to harm her fetus-babies. The difficulty was knowing what would harm them and what would not. Her immediate and pragmatic concerns were at once terrifying and paralyzing. Finally she made a deal with herself: each day she set aside a limited amount of time during which she would allow herself to cry. Although in large measure Helena had lost control of her body, she reasoned that if she could control her response to it, she might save her pregnancy. At times, however, the responsibility for fetus-baby survival fell not only on a patient-mother, but was shared by her fetus-baby. In some fetoscopy cases, women not only saw themselves as caring mothers of struggling fetus-babies, but also felt they knew the baby and reasoned their role as a caring parent was to assist their fetus-baby in his or her attempt to live (on neonatal and parental struggles within NICU experiences, see e.g., Layne 1996). Thinking of the fetus-baby as failing yet struggling to improve occurred not only among patient-mothers but also among medical staff. To illustrate, Tina May, who was 36 at the time of our 1999 interview, recalled that after her surgery to remove a rare blood clot from her baby, Martinez told her he saw her daughter practice breathing in utero. Tina seemed to find comfort in the belief that the baby was trying to avoid death. Medical observations of in utero entities may be expressed as readings of medical situations (e.g., stress on the heartbeat or bloodflow) or social states (e.g., reifying the individuality or agency of the not-yet-born fetus-baby); however, some patientparents did find consolation when medical staff assured them their
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fetus-baby was trying to live. Although some cases demonstrated a level of shared responsibility between a woman and her fetus-baby, patientmothers, as the “interface” between the fetus-baby and the outside world, bear the brunt of failure and blame accusations. In another case highlighting the importance of medical provider views, Veronica Adams, who at 35 underwent fetoscopy for TTTS in 1996, recalled a member of the medical staff urging her not to give up on her daughters: I remember a lady in his office, she came in and she was Spanish, I think. She said, “You know, we have a saying in Spanish—” and she said whatever it was, and it was basically, “don’t give up hope until it’s over—.” And she said, “I was in there with you, and I want to tell you something . . . the little one is a fighter.” She said, “We gave you the anesthetic and it was enough to put you out, and the larger baby went out right away. . . . You were out of it, the larger baby was out of it, and we had a heck of a time getting the little baby down . . . she is a fighter—don’t give up ’til it’s over.”
Veronica was desperate to save her daughters. In the interaction she described, the woman in Martinez’s office offered her empirical evidence she should not give up on her daughters. She let Veronica know what she saw and further pushed Veronica to believe in her daughters’ desire to thrive. Unfortunately, though these words may have been encouraging they may also give false hope in an emotionally traumatic situation. Ultimately Veronica lost both her daughters to the condition. Yet not all experiences with medical professionals were positive. In fact, one case in particular went beyond unprofessional and, in my view, was immoral. Jenny Galto lost her fetus-baby shortly before before her thirty-ninth birthday. She was a low-income patient-mother who underwent a new technique in an effort to seal her leaking membranes. During our interview she discussed her feeling that she might have contributed to the death of her in utero son, Timothy. According to Jenny, she needed to use the restroom; unfortunately, she was constipated and could not force a bowel movement. Later, Timothy died. Following the loss, Jenny remained in her hospital room recovering. That night a nurse whom Jenny will never forget stopped in to see her. Jenny described the encounter: Jenny: The nurses were wonderful, I never did get to thank them—they went beyond, just to try and help you through everything.
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DB: What did they do? Jenny: Except for there was one nurse. The night I lost Timothy—the night the water broke that—to this day I can still see her face—she had blonde hair and like real bright purplish-blue eye shadow—real dark on her eyes, and she knew that I had asked Dr. Martinez to let me walk to the bathroom instead of using a bed pan and after the water broke and they found out the baby died she came in the room and she told me, she said, “Well this is what you get for wanting to walk to the bathroom.” And she walked out. DB: WHAT?! Jenny: Yeah. DB: Oh my God! Jenny: That was horrible. I figure that had a lot to do with it, if I had just stayed in bed like Dr. Martinez asked I probably would have been fine. . . . I still [see] that nurse’s face, that one. Because I guess that it was—it pretty much is true, I keep saying—I do have that thought that I killed him. That was my fault. . . . I don’t know. Just as medical teams can help patient-parents through their losses they can also exacerbate them.14 Maternal blame was particularly salient in issues surrounding ligation. As noted earlier, the boundary between ligation and termination is treacherous for women to negotiate in a cultural context in which prolife and pro-choice rhetoric of abortion politics are starkly dichotomized. Historically, there has been little gray area in the abortion landscape. Assumptions of maternal care and nurturing are turned upside down when patient-parents struggle with the concept that being a caring parent to one fetus-baby requires tying off or disconnecting another wanted, albeit nearly lost fetus-baby. Unlike acardiac cases, in which women decide to end the development of a never-viable entity, women with TTTS must decide when to end development of a once viable fetus. This may increase the potential for maternal blame for ending the once-viable gestation in TTTS through ligation. Some patient-mothers and their supporters lamented that they wished “nature” would take its course, letting the dying fetus-baby simply pass away in utero thereby relieving them of the choice to ligate
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it. Unfortunately, such in utero loss may threaten the health of the other if the dead fetus bleeds into the co-twin. In 1997, Wayne Bacon, a father who had lost one of his sons to ligation due to TTTS described the painful quandary: “We were told that Baby A’s chances of living or surviving were virtually zero. Baby B’s would be virtually zero if we didn’t do something immediately. . . .” While neither he nor his wife wanted to lose a fetus-baby, the prospect of losing both because one would not live, was also unacceptable. Even when individuals agree that ligation is acceptable and wanted, they may position the procedure and its philosophical and moral meanings differently. Although the Bacons both wanted ligation, and consented to the procedure, its meaning (including potential blame) varied subtly between them. Wayne thoroughly believed they were responsible for making a decision that killed their son and Stephanie equally believed they had not: Stephanie: I still believe in the right for the woman to choose [abortion] . . . but I know that my, down underneath, my personal thing is, I can’t do that. So that it was so hard for me . . . to say, “Yes” to Baby A going and—so that Baby B can survive. Wayne: The moral issue is, and the reality of it is, we have killed a baby . . . we just assisted with what was actually already happening . . . Stephanie: I don’t look at it the way that you look at it. I do not look at it . . . that I’ve killed something. I do not look at it at all that way. In my mind it’s just that I know that this baby has died, but I don’t look at it that I’ve killed something. Wayne: . . . I think what we’re both having a hard time struggling with is there was a heartbeat . . . Stephanie: There was movement . . . Even though a patient-mother and her companion(s) may consent to or accept ligation, they may disagree on the more subtle and destructive constructions attributable to the loss. Whether patient-parents lose a twin early or later in gestation, they live with the paradox of a pregnancy ending in life and death. Christi Andrews, a high-risk OB nurse in her early 20s, told me about one
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woman who refused fetoscopy and subsequently lost a twin but carried the other to term. The woman returned to the hospital to give birth at which point Christi cared for her. Although her family and supporters were excited over the new baby, Christi’s patient was crying hysterically. Christi said, “She has this beautiful baby and she was still mourning the loss of the other. . . . [She said] ‘I’m glad it happened this way. At least I know I didn’t do anything to that baby. It died and that’s the way it was supposed to be.’ ” The pain and confusion of losing one baby and having the other survive can reek emotional havoc on the parents. As summarized in one nursing journal: “When one twin dies perinatally, mothers and fathers have a very confusing, ambivalent introduction into new parenthood. Congratulations and condolences, birth and death announcements, baptismal gowns and caskets are all a part of the first few postpartum weeks” (Swanson-Kauffman 1988:81; see also, Sychowski 1998). Parents who lose a twin lose not only a gestation, fetus, or baby, but also their outward appearance as parents of twins. Parents who have prepared for twins must now return to having only one bassinet, only one highchair, and half as many diapers. In fact, the fear of losing her fetus-babies to TTTS led one mother to leave her baby shower gifts in the trunk of her car. She could not bear to bring them into the house. What if one or both died? How could she disassemble a nursery for two? The Social Context and the Individual Together, fetal familiarity and reproductive rhetoric form a context in which women, their supporters, and larger social contexts determine what pregnancies entail and what medical actions are and are not deemed appropriate. Investigated at social and individual levels, there is clearly a fine line between how “women are” affected in general by reproductive technologies and how a particular “woman is” affected by seeing and interacting with her fetus-baby. A pregnant woman, like an in utero fetus, does not exist in “an ideological vacuum” (Stabile 1992:196); she is part of a social network that actively builds the hopes and dreams of her pregnancy with her (e.g., Layne 1999b). The rhetoric accompanying reproductive experiences with reproductive technologies such as fetoscopy exists against a legal and cultural backdrop of
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abortion debates, setting the political stage for an explosive social dilemma, especially for personal decision making within a hospital upholding Catholic doctrine and ethics. As a procedure affecting definitions of life and death, fetoscopy lies at the intersection of Western medical and scientific advances’ religious beliefs and doctrine. Both Western science and religion form the bases on which many individual decisions are made and define what individuals believe they can do within legal limitations and the parameters of personal beliefs regarding the appropriateness of specific procedures. Contextual issues including religious affiliations and scientific backgrounds entered decision making by patient-parents and caregivers alike. Patient-mothers, referring physicians, and others in the social network and fetoscopy team had to negotiate intertwining religious, spiritual, and moral beliefs as they played out regarding the treatment offered. As women make decisions about fetoscopy, they not only carry their own background assumptions regarding fetal, medical, and family acceptability, but are also part of a larger sociocultural context in which the fetus is embedded in fetal politics and often visualized as an entity distinct from the woman who carries it. With this distinction, some women may find comfort in undergoing fetoscopy while others may find their personal desires and beliefs at odds with some of the cultural narratives that affect their pregnancies. This is not an unusual situation. Any pregnant woman facing prenatal technologies and screenings must balance her own assumptions and wishful images against those of a larger culture (c.f., Firestein 1989). The remainder of this book brings this decision making into stark relief against the background assumptions of others, including the Catholic Church. While procedures such as ligation may prove confusing to individuals trying to reconcile assumptions of pro-life Catholic doctrine with fetoscopy, other procedures are not as confusing and, in fact, many procedures are clearly intended to save the life of all developing in utero entities while minimizing future illness. Such procedures include placing shunts (bladder obstruction) into ailing fetuses and cutting in utero tissues that hinder fetal growth (amniotic band syndrome). Both fetal conditions and fetoscopic treatments can be confusing and challenging to many trying to reconcile assumptions of acceptability with their
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concerns for in utero entities of both treated and nontreated pregnancies. While religion and scientism may form a generalized context in which decision making occurred, other individual attributes such as professional background and relationship to the hospital, as well as reaction of friends and family, largely impacted whether or not they would support specific developments and general fetoscopic use. Yet patient-mothers could only choose to undergo fetoscopy if the hospital supported its use. Medical and other professionals at Holy Names form an “in-house” collective that must be examined. Together they talk through cases and assist each other in making sense of the experience. Although numerous people are involved, they do not all support fetoscopy regardless of effect. Indeed, most had both positive and negative things to say about the procedures. From this mismatch of social knowledge, a growing web of interests and assumptions allowed fetoscopy to exist at Holy Names. This collective, how it developed, and who supports it are examined in the following chapter.
4 How to Create a Fetoscopy Collective: Define the Risks and Find Participants
If fetoscopy is to grow beyond the handful of limited settings in which it exists, its practitioners and supporters must convince their colleagues, patients, and the larger culture that it is a worthwhile procedure. Supporters will need to find medical allies and willing patient-mothers, to ensure others that the risks of fetoscopy are reasonable and that patientmothers and their caregivers alike should pursue the procedure. Put simply, as more individuals grow to accept the techniques, it will be easier for hospitals to institute it, physicians to offer it, and patient-mothers to consent to it. Gaining legitimacy lies partly in physically constructing fetoscopic procedures and creating the social organizations and languages to promote and secure their use (e.g., Arney 1982; Fuchs 1992; Latour 1987; Latour and Woolgar 1986; Freidson 1988). For fetoscopy to develop, individuals must create a social context in which a new procedure makes sense and identify a means of convincing others to support specific developments. At Holy Names, like-minded individuals who support fetoscopy try to convince others that their medical positions and personal beliefs are credible; at the same time, many people attempt to dissuade others from using or supporting fetoscopy by arguing that it is not worthwhile and, for a variety of reasons, should not be pursued. At Holy Names, fetoscopy supporters form a social group or “collective” that helps to normalize the procedures by supporting and recognizing the emerging techniques (Fleck 1979). Creating this visible group is important: first, it ensures a social place for fetoscopy at the hospital; and second, it helps supporters identify like-minded individuals. Yet coming together to form this collective is not always easy, nor is it necessarily enjoyable.
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Defining Risk Whether or not individuals support the emergence of fetoscopy is related in part to how they define risk. Risk may be defined in a number of ways. Referring physicians may think of risk as whether or not a procedure has an established history and recognized statistics for yielding live births. A patient-mother, on the other hand, may define the risks of fetoscopy in relation to her potential maternal blame or failure should she decide not to pursue an intervention. In all cases, patient-mothers, their referring physicians, and often their larger social networks (including families and religious institutions) must negotiate and define multiple kinds of risk before deciding whether or not a particular procedure is acceptable. To appreciate the complexities behind medical decisions, it is important to know how others influence or create a context in which consent is given and procedures delivered. Among other issues, the fetoscopy context includes individual beliefs, social norms, professional habits, and legal restrictions. With each patient-mother and procedure, these issues and countless others mix and match to form the context in which decisions are made. As examined in the previous chapters, it is misleading to consider decision making, including accepting or rejecting a technique, a solely individual matter. It is difficult (and some might argue impossible) to separate individual wishes from their broader social context (e.g., Fleck 1979; Rapp 1999; Restivo 1994). All fetoscopy decision making must be contextualized within a Western medical framework complete with cultural dichotomies, often assuming conflict framed by risky decision making. Limiting reproductive experiences to dichotomous contexts (e.g., us vs. them or pro-choice vs. pro-life) does not reflect the complex context in which individuals make difficult reproductive decisions. While dichotomous reasoning may help clarify some issues by simplifying differences in perspectives, they may also oversimplify and prevent individuals from seeing the similarities in their views or considering other approaches. On one level, dichotomies draw people together; on another, they threaten to silence potential dialogues. Those who dichotomize a fetoscopy social network into pro and con or ally and antagonist, without identifying shared hopes and concerns may overlook opportunities for recognizing
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and building understanding. Dichotomies are easy. Dialogue is difficult. Yet the one thing that might have ensured a future for fetoscopy at Holy Names was to increase the discussions between individuals who supported the procedure and those who did not. Unfortunately, for those working at Holy Names and for those patient-mothers and their supporters who came to Holy Names for treatment, dichotomous assumptions were often a matter of course. Assumptions of right and wrong and life and death frame the Western medical context where conflict and embattlement metaphors play out on pregnant bodies and limit discussions (e.g., Martin 1987; Rothman 1986; for other options, see Fujimura 1995). Following the rise of the Western hospital and obstetrics, women’s pregnant bodies have often been viewed by the medical establishment as potentially dangerous or out-of-control environments that should be monitored and medically managed.1 At the very least, within medical practice the body must be statistically known: physicians decide what constitutes “normal” activity, growth, and measurement. Pregnancies are studied and, with varying levels of certainty, are assumed to be known. Against this backdrop, high-risk pregnancies are measured and statistics offered to help patient-mothers and their providers make informed decisions as to whether or not to pursue medical intervention. Risks are weighed and decisions are made.2 Not all fetoscopy risks can be measured as disembodied statistics; the risks of fetoscopy also encompass the invisible, emotional risks of learning about the procedure and making the decision to consent to surgery. Unfortunately, foundations in scientism and medical publishing patterns often limit the kinds of risk reported in medical journals. Although most medical journals do report the risks of physiological trauma, including morbidity and mortality for a patient-mother and her fetus-baby, generally absent are the ubiquitous sociocultural risks that inform fetoscopy decision making. Medical reports are distant and “objective” statements (sometimes ending in “discussion”) concerning a new finding for the medical procedure. They report on a medical procedure, not a medical experience. Although medical journals are helpful to some, they are at best only half the story.3 Risks such as emotional trauma and family conflict are crucial to fetoscopy decision making, yet remain absent from most medical reports.
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To address these issues, staff at Holy Names would meet with patientmothers before surgery to ensure that they had both professional medical information (e.g., informed consents and medical articles) and nonprofessional medical information (e.g., copies of newsletters explaining new procedures, guides to social services resources, and literature intended to address a lay audience). This information was assembled in a “patient packet” and patient-mothers were encouraged to take the materials, read through them, and approach Martinez, Kay, and others on the fetoscopy team with any questions before their surgeries. Depending on definitions of risk and acceptability, people make their decisions whether or not to support (i.e., develop or undergo) fetoscopy. Reflecting their beliefs surrounding physiological and sociocultural risk, some people at Holy Names supported fetoscopy, others did not, or at least not overtly, and still others were fundamentally against it. Those who supported fetoscopy included referring physicians who at times accompanied their patients on their travels to undergo procedures and nurses who believed that fetoscopy was an exciting procedure and willingly worked extra hours (without pay) to entrench the procedure at the hospital. Other medical workers’ reactions to fetoscopy were relatively noncommittal; for them fetoscopy was a new procedure the hospital offered, with a new group of patient-mothers for whom they would care if assigned such duties. The third group, who were fetoscopy antagonists (for at least some procedures, notably ligation), included physicians who would not refer patients, family members who did not support patient decisions, and Holy Names medical workers who did not believe that fetoscopy (or elements of the procedures) had a place at Holy Names or within the Catholic tradition. These categorizations are not meant as stark classifications: few individuals fully supported or rejected fetoscopy procedures; however, a spectrum of acceptability and support does exist for fetoscopic procedures, and individuals move along this spectrum. Depending on where they place themselves on this spectrum, individuals either substantiate the fledgling fetoscopy procedures at Holy Names or believed that the procedures were inappropriate and worked to limit their use and thereby development.
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At Holy Names differently trained individuals merge their interests, hopes, and fears into a growing fetoscopy collective. Beyond physicians and nurses, social workers and chaplains likewise build the social support networks that many patient-parents need both while at Holy Names and after returning home. However, unlike the nurses and physicians, these individuals spend varying degrees of time with patientparents. In some cases patient-parents spent a great amount of time with chaplains and social workers, while others spent very little time with them. The fetoscopy collective at Holy Names is structured such that social service professionals and chaplains move in and out, as needed. In doing so, they affect patient-parent experiences and form their own beliefs about fetoscopy’s acceptability, which in turn affect their future interactions with others. Although chaplains and social services professionals both address the psychosocial content and context of patient-parents, their emphasis on theology or social affairs makes their approach and concerns different. These explicit differences may also lead patient-parents to accept help or conversations from either one or both professional groups. Some patient-parents, specifically those facing ligation or certain fetus-baby death or loss, would likely interact with social services professionals to ensure that they understood the legalities of their decisions (i.e., knowing how to dispose of the dead baby once delivered) and may begin grief counseling. Another function of the social services professionals was not only to ensure that struggling patient-parents be assisted while at Holy Names but to help link these individuals with similar services at home. Like the social service workers, chaplains at Holy Names also help create patient-parent experiences, shaping the emergent procedures and reactions to their experiences. The chaplains conduct religious practices and work with patient-parents to create a spiritual place for reflection. From bedside memorials to patient-parent reunions and remembrances, chaplains often played a strong role in molding fetoscopy experiences. Although Holy Names furnished most chaplains, some patient-parents also brought their own clergy to the hospital. As discussed in the previous chapter, religious figures and beliefs affect both patient-parent and
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caregiver experiences, ultimately leading many to accept, reject, and always question fetoscopy. Although chaplains and social workers play a part in helping both patient-parents and providers through difficult experiences and decisions, the clearest participants in developing a fetoscopy collective are the medical providers at Holy Names. Medical professionals, from nursing assistants who care for patient-mothers on the high-risk floor to anesthesiologists entrusted with maintaining the safety of a patientmother and her fetus-baby during surgery, form a large and relatively stable basis for fetoscopic interest to grow. The beginning of the collective can be traced to the acceptance of Martinez’s offer to move his practice to Holy Names and begin offering procedures. The transition was not always easy, but a collective clearly emerged. The Medical Team and Their Risky Technology As noted earlier, Martinez left a large teaching hospital to join Holy Names in 1996. This transition affected his professional life, as he was now committed to the task of developing cutting-edge medical technology in an unusual location. This was a professionally bold move on his part, and not one that many research physicians are willing to risk. In fact, one weekend during my time at the hospital I accompanied Martinez and other perinatologists to a professional conference to see how they shared their findings. As I read posters on clinical developments in perinatology, I continued to return to Martinez’s poster that explained some of his fetoscopic techniques. At one point, a physician commented that he was waiting and watching to see if Martinez could make fetoscopy work in a nonresearch setting. I wondered the same. Years later, in 2005, I learned that at least one other well-known physician practicing fetoscopy also left a teaching university for a private practice. Shortly after hearing this, I learned of Martinez’s move back to a teaching hospital. Fetoscopy can develop in both types of facilities; however, it is likely to evolve in different ways reflecting the interests of those who work in the hospitals. In all cases, the physician and research team must continually work to create a stable collective that will promote fetoscopy use if the procedures are to flourish.
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In 1996, as a newcomer to Holy Names, Martinez needed to convince others that fetoscopy was useful and medically appropriate. Yet not everyone at Holy Names wanted to learn about fetoscopy or were supportive of its use in their traditional, care-oriented, community hospital. At Holy Names professionals participate only minimally in teaching activities and research protocols. Within a multidisciplinary teaching hospital or research organization, it is relatively easy for professionals to meet and merge into new research groups; however, at Holy Names this interaction is less obvious or possible. Nonetheless as a newly emergent procedure, fetoscopy needed the kind of research collective found at teaching hospitals to sustain it. Such a research arena was something Martinez and others worked to build and institute at Holy Names in their efforts to ensure continued growth. In 1998, I asked Martinez to explain the differences that he saw and experienced between the teaching and nonteaching environments and to elaborate on how these differences affect fetoscopy development: Martinez: The University environment provides a so-called critical mass that is not necessarily . . . in a nonteaching environment as the one we have here. So our role is, in fact, to generate that mass to put together that critical mass. To put together that group that doesn’t exist when you work in private practice. And we have, to a certain degree, accomplished that. (italics added) DB: What constitutes that critical mass? Martinez: Well, a group of sub-specialists in the different areas that have an interest in fetal therapy and that you can talk to about your ideas and they could share, you know, their ideas, concerns, views, etc. This critical mass or social collective forms the social basis of fetoscopy at Holy Names. Although an individual is enrolled in the fetoscopy collective, how much he or she supports different aspects of procedures is not always clear. It is not enough to identify individuals in the social collective without accounting for variations in their interests. Particularly important members of the collective are the perinatal partners who chose to bring Martinez to Holy Names and in so doing introduced fetoscopy to the hospital. Perinatal partners must understand, and to various degrees support, the procedures while acting as surgical
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assistants and medical providers. Assisting in cases gives them further insights to help them determine their level of support for different aspects of fetoscopy and ultimately decide to what degree they wish to professionally support procedures. Simply being partners with Martinez does not ensure that they support fetoscopy or view its existence as a boon to their practice. Their interest in cases or belief in procedural advantages or disadvantages, however, directly affect the potential position of fetoscopy at the hospital. As each partner spends more time with Martinez in and out of surgical situations they learn more about the abilities and ramifications of the procedures. These lessons, however, do not guarantee support of fetoscopy and in fact may lead to opposition from his closest colleagues. To illustrate, one partner, Wayne Peterson, viewed fetoscopy somewhat critically while recognizing its advantages and disadvantages.4 At one point during his interview he expressed reservations. In particular, he was troubled by its limited uses and the lengthy learning curve that the medical group and other supporters must tackle to deliver fetoscopy effectively. Peterson explained his wariness: I think . . . [fetoscopy] has very limited usefulness. I think its usefulness has yet to be defined. I think what we’re using it for here to some extent probably will not be done on any follow through basis. I think we’ll find that some of the things that we’re doing it for now is not really helping, maybe hurting, so in the long run, may not eventually be done. But, I think it has its merits in certain circumstances and, unfortunately, it’s something that does not benefit society as a whole. I mean because it can only really help or affect very strange problems in pregnancies. So it’s not going to have a huge impact. . . . I think it’s going to take a long time to figure out which cases won’t really work and which will because the number of patients is relatively small where it can have some impact so it’s going to take 10 years before people finally say . . . [if it can help]. That kind of thing. I think it’s still somewhat on a learning curve in terms of intervention so it’s like anything. It’s going to take years before it finally settles out to where we find that it works.
During my stay at the hospital, Peterson was a medical partner, assisted in cases, and cared for fetoscopy patient-mothers after their surgeries; however, he remained critical of its eventual usefulness and wondered if other treatments for specific conditions might prove more advantageous. He also wondered how long it might take to accumulate enough expe-
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rience and data to discover whether or not specific uses on conditions are helpful. While also acknowledging that the use of fetoscopy was limited, another partner, Benjamin Hofstra, was more certain about its current and future usefulness, as he expressed in a 1998 interview: There are . . . diseases that you can’t diagnose by ultrasound, for example, a whole host of skin disorders which none of those can be diagnosed by ultrasound because skin is not something you can really see. But by fetoscopy . . . you can actually see the skin, you have access to be able to biopsy the baby. In the past it was a blind biopsy they . . . [did] it ultrasound guided. But . . . [with fetoscopy] you can actually look at the skin, you can make sure that you’re getting [the biopsy from a region where] . . . [it’s not] disfiguring . . . [and] you get an appropriate biopsy. You can give the parents an idea of whether the skin looks abnormal or normal. Um, so from that perspective fetoscopy, I think, adds significantly to ultrasound. Um, I think that as far as—I mean . . . fetoscopy is so related to fetal surgery sometimes that it’s hard to separate . . . just the ability to be inside the uterus and be able to alter the intrauterine environment whether it’s by—you know, if you have an acardiac twin . . . ligating cords on them . . . to protect the surviving baby. . . . The laser therapy for twin-twin . . . hasn’t been as successful as we had hoped at least to this point, but that’s a potential avenue that has merit. And, you know, for bladder . . . obstruction that’s I think a big plus. . . . So from that perspective I think it’s a very useful tool.
After I left in 1998, the practice grew significantly. Although one partner left, numerous other physicians continued to visit the site for short studies with Martinez through a variety of funded opportunities. Perhaps the greatest boon to the practice was its growth from five perinatologists in 1998 to seven in 2005, one of whom eventually came to conduct fetoscopy procedures on his own after rigorous training under Martinez. Overall, the practice grew and the number of physicians capable of conducting fetoscopy doubled, from one to two, between 1998 and 2005. A strong collective also requires nurses and other paramedical providers who support the procedures. How nurses react to fetoscopy is an important indicator of growth or stagnation in acceptance of the procedures. Without nurse support, fetoscopy procedures could not take place. All fetoscopy procedures are performed at Holy Names, and an operating room is specifically designated for its use. Although Martinez spends time at a handful of clinics around town, the nurses at Holy
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Names are the only nurses to work on fetoscopy. Nurses involved in fetoscopy at the hospital can be separated into three groups: those who are on “the team” (a limited number of primarily surgical nurses), labor and delivery nurses who care for patient-mothers immediately after surgery (generally no more than a few hours), and high-risk obstetrics (HROB) nurses who care for patient-mothers following their stay in labor and delivery, but before they are released from the hospital (generally 24–48 hours). Because of the important role nurses play, and their significant number and close interactions with patient-parents, their contribution to building a fetoscopy collective should be examined in detail. Although research in a nonresearch hospital is challenging without the organizational structures and ecologies of knowledge that support medical research (e.g., workers accepting the flexibility of experimental procedures), the nurses at Holy Names nonetheless offer fetoscopy distinct advantages (on ecologies of knowledge, e.g., Star 1995). First, they are primarily bedside nurses. They were trained in an “ethic of care” and clearly took their role as both medical nurses and compassionate providers seriously (Reverby 1987). This may stem from the fact that the nurses who commonly cared for the fetoscopy patient-mothers were not “researchers.”5 Their goal was to make the patient-mother feel better, and they cared for her physically and emotionally. Once a patient-mother was brought to the HROB floor, nurses had little organizational or political interest in fetoscopy as research. They were nurses who cared for patient-mothers undergoing fetoscopy; they were not “fetoscopy nurses.” During my time at the hospital, I found no HROB nurses who refused to work with fetoscopy patients, but there were some who were not certain they had all the information they needed to care for these patients appropriately. In these cases, some nurses approached Martinez for further information on the procedures and necessary follow-up care. Unlike the surgical nurses who were present at surgeries in which a fetus could die (e.g., ligation), most HROB nurses were far enough removed (physically and temporally) from these ethically ambiguous surgeries to develop a strong position for or against its use in the hospital. A second factor affecting fetoscopy development was that it could be exciting for the nurses. Patient-parents came from great distances to be treated with a new procedure to “save the baby.” Unlike other patients at Holy Names, the majority of fetoscopy patient-mothers came from
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out of state. Only extremely rarely did the patient-mother come from the local community.6 Unlike more traditional and instituted procedures that were common at Holy Names, such as breast reconstruction and cesarean sections, fetoscopy offered nurses (especially operating room nurses) the opportunity to venture into relatively unknown terrain. They had not learned about fetoscopy in their nursing training. What they learned of the technique was learned “on their feet” (Schumacher 1989). This new technique challenged nurses who were in the previously comfortable or mundane situation of knowing the medical condition and therefore knowing its treatment. With fetoscopy, the condition and treatment were generally little known in professional and lay settings. Nurses not only reacted to patient-parents who were potentially confused about their conditions and treatment options, but also worked with procedures that were not completely stabilized, that is, they were constantly being altered to better approach the case at hand (e.g., Bijker, Hughes, and Pinch 1987). Nurses working with fetoscopy had to accept that they were dealing with a highly flexible and quickly changing technology. Its procedures cannot be memorized and conducted by rote. Some nurses embraced the lack of familiarity as a challenge, whereas others saw it as a threat to their tested medical knowledge. For many nurses, fetoscopy spurred dramatic changes in their professional work. For some it proved professionally and personally rewarding, for others an unwelcome development. The processes of gaining nurse support were quite diverse and often personal. Maria Jacobi, a seasoned labor and delivery nurse in her mid30s, was by her account one of the first nurses to work with fetoscopy patient-parents. In our 1998 interview, Maria explained that over time she felt fetoscopy at Holy Names has slowly gained nurse support because Martinez took the time and interest to explain his techniques and answer nurses’ questions in intimate (e.g., one on one) and formal (e.g., hospital lectures) settings. Martinez’s explanations began the process of normalizing medical procedures and entrenching fetoscopy as an acceptable reproductive procedure. Maria explained: Maria: I think initially, not really knowing what it all entailed, some people had some misgivings about the procedure. I don’t think a lot of us really understood that the alternative was to lose one or both babies
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with or without the surgery. . . . I think some people looked at it as a termination of pregnancy instead of a way of preserving a life. So I think getting over that hurdle made a difference also. DB: How did that transition occur? Maria: By him actually giving talks and explaining . . . these are the conditions, and this is why we are doing this—the types of babies that were involved in the procedure. . . . I think just having that explained and seeing his concern for the types of patients he was seeing I think that made a big difference. A big impact. DB: His concern? Maria: Right, that he wasn’t just doing this for the fame and glory of it all, but that he was concerned that these mothers were losing these children and there was something he could do about it. Alluding to Martinez’s personality and apparent compassion, Maria believed that his informal conversations with nurses on the labor and delivery floor helped him build a place for fetoscopy within the hospital in the early days after his arrival. In these informal settings, nurses are not only enrolled by the effectiveness of the procedure, but also by the personality of the physician. Like Maria, Christi Andrews, an HROB nurse in her late 20s, also pointed to Martinez’s style or approach in explaining his procedures: Christi: At one point there . . . [were] a lot of nurses, including myself, who said, “I don’t feel comfortable doing this—I don’t know what I’m doing—I don’t know what the procedure is, and if I don’t know what the procedure is, I . . . [won’t be able to] answer questions for these people the way I should be able to. . . . And so he did an in-service [educational class] on it. DB: To high-risk? Christi: Yeah. DB: . . . what happened? Christi: . . . they scheduled a day . . . he provided lunch, and we all went in and he brought a couple of video tapes . . . he just talked to us about it. DB: Oh really?
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Christi: Yeah. DB: Where was this? Christi: On our floor, room 324. DB: Did he answer questions? Christi: He answered questions, he told us what was important. . . . Equally important to his supplying the information nurses requested is the location in which it was delivered. Martinez explained the procedure with a private tutorial on their floor. Another HROB nurse, Claire Mathews, a younger nurse in her early 20s, was more critical and wished there had been more education and possibly a video that nurses could watch on their own time. Although she believed that most nurses had a general sense of the procedures, she felt that still more education was needed. Claire stressed that nurses acted as translators to patient-parents and as such needed a solid understanding of the procedures to be effective in their role. As demonstrated previously, a cornerstone to nursing practice is an “obligation to care” (Reverby 1987:1). Most nurses at Holy Names were well aware of their professional obligations to care for patient-mothers and enjoyed filling this role. One way that Martinez appeared to enroll nurses was to present fetoscopy within a similar or complementary ethic. During interviews and informal conversations, I was frequently met with explanations, pronouncements, and testimonials lauding Martinez’s sympathy for his patients-mothers. At the same time, I was often informed that such concern was not always the case with other physicians. Moira MacGregor, an outgoing surgical nurse with an equally outrageous sense of humor, was particularly intrigued by Martinez’s unhidden emotions. In her mid-40s, Moira had worked with many surgeons during her career. When I asked her about Martinez, she described his approach and behavior: Moira: And he’s almost like a kid when it goes real well, he just gets so excited. And it’s just like he wants to just bust out and just start running up and down the halls going, “Yes! It was a good, good case, and, ha!” You know? Wow! You know how he is. DB: Yes.
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Moira: Oh, he LOVES it, it’s like, he’s just like a kid, and I’ve conquered something, you know? So I guess that’s what doctors feel like when, or whoever comes up with the serums for like cancer and AIDS and things like that. It’s like, YEAH! Finally found it, you know? Shortly later, Moira continued to reflect on the not-so-positive experiences: DB: What about, then, cases that don’t go so well? Moira: Oh, God, I, I have seen him, he was almost in tears. . . . it was bone crushing to see him and to watch him be so totally upset. You want to cry too. . . . [In one case we got a] morale group together, and we’d go into the lounge and we’d talk about the case and get it off our shoulders. And we’d cry. And we’d talk about, you know, that we felt really bad for the patient and that we lost the child, and, yeah, it’s tough. It’s tough to lose one. Gosh, you’re going in there with the hopes that this is going to work. . . . And so when we get together on the really bad ones, on the really bad cases, and we talk about it. Together Martinez and fetoscopy nurses not only create procedures, but in some cases make sense out of the successes and traumas.7 As they form their narratives, they strengthen the collective by building its history and culture. Returning to HROB nurse Christi Andrews, like Moira, she not only commented on Martinez’s concern for his patient-mothers, but intriguingly also compared his actions and emotions to her own: [At night] he’ll usually call before we call him. He’s like a mother hen. He’ll come in, in the middle of the night. I work until 10:30 [at night]. He’ll have a patient he did earlier in the day, and he’ll show up at 10:00 o’clock at night with a bedside sono[gram]—because he wants to know—in shorts and a T-shirt. You know he just kind of appears. I think he sits at home and starts thinking about it and can’t stand it—has to get in the car and drive there. DB: That’s very possible, I think. Christi: . . . there’s been patients I’ve done that with, so I’m sure he does.
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In seeing him as a caregiver or mother hen, some nurses were able to blur the boundary between Martinez as the physician and themselves as nurses. Whether a nurse saw Martinez as more nurselike in parts of his caregiving, or simply friendlier than other physicians, the comment nurses frequently offered when asked about Martinez was, He’s just a nice guy. The apparent breakdown of certain hierarchies, professional distances, and gendered roles certainly assisted Martinez in enrolling nurses. This is not to say that Martinez relinquished his decision-making or medical authority. As Christi also critically pointed out, it’s in his best interest to build social relationships with the nurses: Christi: He’s a very good doctor, he’s a very nice man, he’s very pleasant to work with, but when it comes to these patients, he knows they’re delicate, you know they’re delicate, you need to do things his way. And when he calls at any hour to . . . [ask] what’s going on with this person you need to know what’s going on with that person. It’s like that with any patient, but especially these patients. And because he is good to us up there [on HROB]—I really like to help him out as much as I can. DB: What do you mean he’s good to you? Christi: He’s very nice to us. There’s a lot of doctors that aren’t very nice. He’s very nice to us . . . there’s not many doctors that know us very personally. Dr. Martinez could probably tell you what part of town we all live in, you know? (laughter) I’m just trying to think of something personal that he knows—or so and so, how many children she has, or if I’m married . . . because he talks to us as a friend. . . . and if I had any questions—and it doesn’t have to be one of his patients . . . he will more than explain to me what’s going on. . . . DB: That’s not a norm necessarily, with the physicians? Christi: No, no they don’t have time for that. He just builds a nice rapport with all of us. That’s probably the way to say it. He’s got a nice rapport. DB: That’s a good relationship it would seem . . . if you’re up there working with those patients. Christi: Yeah. I think he’s in an ideal situation. I bend over backwards for him.
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She continued to reflect on Martinez’s situation and confided: He’s a smart man, maybe he’s thinking ahead? I’m going to have these patients here—I better build a nice rapport with these people and they, in turn, will help me out. Maybe it’s just good planning. But I think it’s just his personality.
Some members of the fetoscopy surgical team also suggested that these characteristics made him someone for whom they would work especially hard and, implicitly, someone with whom they would build a collective and substantiate the legitimacy of fetoscopic procedures at Holy Names and abroad. As Maria noted, many labor and delivery nurses were confused by fetoscopy in the beginning and not certain if it had a place at Holy Names because of some of its similarities with abortion. Much of this confusion can be linked directly to the fact that most who work at the hospital as caregivers (not administrators) appeared unaware of the doctrine of double effect or its use in Catholic decision making. Moira confirmed that this was also the case in the operating room and, like Maria, explained that the earlier tensions were beginning to subside. I asked why, and she explained: Moira: He has given some talks, and see he’s invited people to come and . . . he’s given written materials out . . . anybody is free to look at his consents. And in his consents they are so verbatim what he is going to do. And why he’s doing it and how much . . . of a chance the baby will survive and how much the baby won’t, and . . . his consents are up for grabs for anyone back there in the surgery department . . . [to] read it. DB: Do people know that, do you think? Moira: Uh hum. That, [and] Kay’s told them several times, look, this is the way it is. And some of the . . . [members of another department] have gotten better about wanting to help out. Before they were like, oh! I don’t want to have anything to do with that. . . . And some of the other people have kind of calmed their heels and thought . . . maybe this is something that’s not so bad. It’s because we’re out there talking. And then Kay has done a lot of education. And so has Dr. M. He’s, he’s talked to them. You know. He’s given them every opportunity to find out what he’s done. Like many nurses who support fetoscopy, Moira strongly believes that with access to Martinez, his team, and their statistics, other nurses will ultimately learn about fetoscopy and support its use.8
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Because nurses may feel more comfortable approaching each other with criticisms (and because Martinez may not be available), nurses already enrolled in the fetoscopy collective must be able to answer the other nurses’ questions and respond to criticisms. Since nurses may feel a bit freer to critique one another (as opposed to critiquing the physician), they act as informational resources to each other and barometers of fetoscopy acceptability. As Martinez enrolled nurses through informal discussions, so too did fetoscopy nurses. Yet not all discussions of fetoscopy were dialogue-oriented. For example, at one point I overheard two Holy Names employees verbally attack Kay for her involvement in the fetoscopy program. They wondered how she could be involved in such an unethical activity: how could she kill babies? Kay retorted that she supports fetoscopy because it saves babies, not because it kills babies. The heated discussion ended with little to show for it. In some cases, conflicts ensue and worldviews appear irreconcilable. Fetoscopy is ethically ambiguous for some Holy Names employees, and it promotes impassioned confrontations. During our 1997 interview, Kay remembered the early cases: A lot of people think [that during surgery] we’re just tying off the cord and killing a baby. A perfect example of this, and I’ll never forget this, we took a patient in the recovery room and the recovery room nurse looked at me and [asked] “Which baby did you kill?” It wasn’t even a ligation procedure. The patient is coming out of anesthesia and for somebody to say that, it’s pretty much a shock. Yeah, as they scrape me off the floor! And I said, “No . . . we have two babies here.”
Kay explained that the patient had undergone laser surgery for twin-totwin transfusion syndrome in the hope of giving both fetuses a chance to survive. With time and familiarity, tensions have somewhat abated; however, some nurses remain guarded and are considered by many as antagonists to fetoscopy use and, in some cases, may see themselves as antagonists as well (or at least saviors to fetuses who may be killed). As noted earlier, most nurses already enrolled in fetoscopy development explain that those who are not enrolled or those who are outspoken critics of the procedures simply do not understand it. These nurses believe that education should quell such differences. While conducting my ethnography, I met nurses who would roll their eyes, shake their heads, or start arguing the ethics of fetoscopy when they realized that I was exploring its development and patient-mother
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experiences. Contrary to some of the assumptions held by fetoscopy nurses, who believed that other nurses would “come around” with education and support fetoscopy, many contrary views were articulated with compelling evidence. To illustrate, one nurse, Gloria Ashford, a woman in her mid-40s, was well known as an outspoken critic of fetoscopy. I was somewhat shocked and extremely pleased when she agreed to be interviewed for my project. When I went to the nurses’ desk to find her for our interview, I tried to be subtle and not let others know that I was looking for an interviewee, and more, that it was Gloria (in honesty, I was expecting to sit down to an interview in which pro-life rhetoric and “baby killing” accusations might occur). When I approached the surgery desk many people were gathered around, including Kay. I planned on catching Gloria’s eye and walk past the desk in the hope that she would follow me to what in my mind was a rather clandestine interview. As she saw me she asked if I was ready to conduct her interview. Heads turned, mouths dropped, and I nodded. Throughout her interview, it was clear that Gloria spent many hours thinking about her position on fetoscopy issues. Far from making vehement accusations, she explained that she had lost a child years ago and still lives with the grief. She so misses her child that she finds it too difficult to be with patient-mothers who “choose” to lose one. She explained that it was particularly important for her to be able to sympathize with a patient-mother to care for her, and in cases of ligation, she could not bring herself to support the patient-mother’s decision. Gloria did not want to be responsible for caring for a patient-mother physically if she could not support her emotionally. Although her position may not be accepted within some assumptions of medical professionalism requiring that she offer the best care she can for any patient-mother, her recognition of her limitations and their effect on her ability to care for a patient-mother are well taken. As demonstrated by Gloria, it is short-sighted to think that a lack of support implies incomplete information; in fact, lack of support might result from being well informed, but within a different moral and historical context. Gloria’s beliefs would not allow her to accept fetoscopy; quite the contrary, they formed a context in which fetoscopy was an unacceptable procedure regardless of patient-mother or physi-
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cian intent. Gloria’s position, and those of others like her, shows that education of nonsupporters is not easy nor does it necessarily imply that all who are educated or informed will arrive at the same conclusions. Although nurse support waxes and wanes, depending on the procedure, some nurses are particularly supportive of fetoscopic procedures and have a firm hand in shaping patient-parent and provider experiences. One of the strongest and most solidified groups at Holy Names is the “fetoscopy [surgical] team,” a term often used by Martinez and recognized by nurse team members. Simply calling the surgical group a “team” contributes to the solidification of fetoscopy at the hospital. The team relies on shared understanding and fluid cooperation. As a team they share a goal (i.e., successful surgery) and work together to attain it. Moira continually stressed the importance of good communication on the team to ensure surgical success. Among other examples, Moira explained what I observed on many occasions: Martinez frequently drew pictures to illustrate an upcoming case and would describe in detail the procedure that he anticipated conducting. Visuals such as quick doodles on empty surgical boxes were invaluable tools because they let the observer see what Martinez had in mind, and then reconstruct it in his or her own mind until it made sense. This was particularly important because some procedures were not yet well known and could change during surgery as complications arose. Following Martinez’s explanations and doodles, the team was better prepared to work as a unit. The ability to actively create procedures was particularly exciting for Moira, who appreciated the opportunity to learn along with the physician and the rest of the fetoscopy team: I think it’s kind of interesting that we’re like at ground level here, and we’re learning as he’s learning. And it’s fun . . . because you stand there, sometimes, and you try to figure out, well how can he get that in there better? How can he get a better scope? And at what angle could he [use it]? We’ve devised all kinds of little things, you know. Well, how can we lasso that cord so that . . . we can hold it long enough so that he can stick a laser in there. And so, everybody works together as a team, it’s really neat. You know, to try and figure out together, how are we going to get . . . that thing [to work].
By taking the initiative in cases such as altering the lights and other visuals or speaking up when they have an idea, Moira and others on the
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team become further strengthened in their belief that fetoscopy can and should be a part of perinatal medicine at the hospital. They become invested in the success of fetoscopy and, in some cases, emotionally linked to its continued development. The importance of the fetoscopy collective being, in part, a research group in which individual contributions were valued, cannot be overstated. At one point, I wrote in my field notes: It is increasingly clear that this fetoscopy team is a research group. The members seem happiest when they know the big picture. Also [when] they are given credit for their creativity and ingenuity. Each case offers new variables and the nurses are the ones who respond by finding tools and sticking them together in new ways. During the “fetoscopy team” meeting [one nurse] made a point to [another] that she and the others would tinker with the scopes, trocars etc. to find a way to make something work. The large degree of freedom and creativity may be very new for some of these nurses. Kay commented to one [nurse] that she knows of few people who are in their 50s who enjoy getting up and going to work. She does. I wonder if she’s excited about being a nurse . . . or a research assistant. Perhaps a bit of . . . [both].
Thinking aloud, immediate action, and credit for ingenuity merge within fetoscopy procedures as team members create social experiences and medical techniques. Like Martinez’s perinatal partners, however, some nurses enrolled in the fetoscopy collective remain critical of their work and question its ethical, moral, and social outcomes. One member of the fetoscopy surgical team, Barbara Marble, a surgical nurse in her late 20s, explained that although she supports fetoscopy, the procedures cause her to think critically about life and death issues. Her concern and confusions regarding her culpability in delivering immoral or unethical medical treatments are apparent in her interview: Barbara: Well, I think it’s really—I think it’s nice that he can go in there and save a baby or two babies or however many babies. And I don’t know, now I just kind of wonder. I don’t know if I should say it. I just kind of wonder— DB: Only say what you’re comfortable saying. Barbara: If it’s really a good idea to interfere and all that. You know what I mean? I don’t know if it’s meant to be for that baby to keep going when he can actually—you know what I’m saying? He can save that
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baby if he intervenes, but I mean, maybe it wasn’t supposed to [live]. Maybe it’s like nature’s way of getting rid of the weak, you know what I’m saying? I mean I don’t—I mean I think it’s neat and I don’t have any problem with that at all. It is a great thing. Because I’m not a mother and I don’t know what it feels like. You know what I mean? I think it’s neat. It is. It’s great that he’s around to help people. Later she added: Like I said, it doesn’t bother me and I think it’s great, but it just makes me wonder about passing on the weak genes. You know? I think there’s a reason for that happening. The ligations—I don’t . . . have a problem with that either. I mean if he can save one, then that’s good. . . . I don’t have a problem with it at all.
Although Barbara claims not to have a problem with fetoscopy, her switching back and forth within her answer illuminates the difficult ethical terrain on which fetoscopy is built and its workers struggle to make sense of its use. She is not alone in her mixed emotions. Explicit Patient-Mother/Parent Contexts Although all members of the fetoscopy collective are affected by their personal contexts, patient-parents are particularly important facets as they are the primary decisionmakers, and compared to the medical professionals at Holy Names, they have little time to learn about the procedures but will live with their decisions and outcomes for the rest of their lives. Of all people in the collective, patient-parents have the least amount of time to form their beliefs regarding fetoscopy efficacy, but in many ways have the most to lose. While patient-mothers and their partner commonly arrive at the hospital alone, at home or nonapparent members of their social network were nonetheless constant factors in their decision-making processes and fetoscopic procedures. Religious affiliations, advice from family members, and personal histories and memories (e.g., education and previous reproductive encounters) formed the invisible context in which a patient-mother consented to surgery and through which she and her social network became part of the growing fetoscopy collective. Family decision making regarding family building was often emotional and could be both helpful and painful. Some patient-mothers mentioned
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family member input and support as important factors in their decisions to undergo a procedure. In some cases, family members were highly valued for their insights, experiences, and financial assistance in making these decisions. In other cases, patient-mothers said they did not want or welcome assistance from family who did not or could not understand their situation. In still other cases, wanted or unwanted, some family members were unwilling to enter into the sticky decision-making process. As Deanna White, a patient-mother deciding whether or not to undergo fetoscopy, explained, everybody knew what was going on but I think everybody was scared to have any input because they knew it was something . . . [where] there was so much [at stake]. If you did it and he lived and had this horrible life. I mean, there was just too much to look at, so everybody was scared to have any input. They were scared to help us make the decision, or push us to make any sort of decision . . . they knew it had to be our decision because we were going to have to live with whatever we decided. So I think they were there for support but didn’t offer any advice.
Deanna was 31 at the time of her surgery in the summer of 1995. It is difficult to imagine such a young woman being faced with these decisions, nevertheless it happened. Another patient-mother, Patricia Leung, was in her mid-30s when she underwent surgery for TTTS in the fall of 1997. Patricia echoed Deanna’s concerns about keeping the family at bay in fetoscopy decision making. Patricia was the first patient-mother that I interviewed. I was unprepared for the poignancy of her position on risks and fetoscopy decision making. Patricia was clear that it was her and her partner’s decision to undergo fetoscopy. No one else could make the decision. After completing her laser surgery in 1997, she explained, “Ultimately the parents can be the ones who can decide and weigh the factors of what risks are and what’s best for their quality of life . . . [ultimately I was at] the point I wished I was dead. I mean the decisions and weighing everything,” she continued, “we just gotta go with our heart and our instincts.” The angst that made her feel death might be better than the decisions involved in fetoscopy was heart-wrenching. I was pained by her experience. Little did I know that similar feelings would continually arise in patient-mother interviews throughout my research. Fetoscopy procedures and the social experiences that surround them have the power to bring people together and tear them apart. The emo-
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tional decisions that go into consenting to fetoscopic surgery continue to shape families after the procedures. Winnie Royal, who at 35 lost her unborn son to a bladder obstruction, believed that the attempt to save their unborn son strengthened her marriage; on the other hand, Veronica Adams felt that undergoing fetoscopy for TTTS, separated her from family members who, though sympathetic, could not share or understand her maternal trauma. To illustrate her separateness, pain, and despair after losing her daughters to TTTS, Veronica compared her experience to that of a mother cat whose kittens were given away: The feeling was just—I mean it was just—I can’t even describe it. You know, the most emptiest feeling you can imagine. And I remembered when I was a kid having a cat that had kittens, and when the kittens got old enough to give away, we had to give all the kittens away and I remember the mother cat just roaming around the house, you know, crying—the terrible meowing—crying sound just looking and looking, and searching for these kittens and you know, I felt the same way. I came home and I just walked, and looked and you know it was like—a yearning, I guess feeling and ahh—[begins crying a bit] and everyday since then, I mean you go on with your life, but every day since then, is a struggle.
Veronica could find commonalties and shared pain with another mother who lost her babies, but not with her family—they simply couldn’t feel the pain like she could. Whether through conferences, publications, or personal interactions, referring physicians also build a fetoscopy collective by sending their patient-mothers for treatment. Referring physicians had a range of views on fetoscopy. Fran Ford was 35 when she underwent fetoscopy. Her referring physician, Dr. Miller, was so supportive of the surgery that he accompanied her on her trip to see Dr. Martinez. Following their return, Fran lost her baby to a rare disease diagnosed after birth. When Fran again became pregnant, Miller’s familiarity with fetoscopy led him to offer fetoscopic diagnosis on this pregnancy.9 The fetus was again diagnosed (this time by Miller) with what appeared to be the same abnormality, and died shortly after birth. Ultimately, Fran ended up with two live babies and three dead. Dr. Miller’s belief in fetoscopy and Fran’s hope for her pregnancy led her to consent to fetoscopy twice. Other referring physicians, such as Carole and Craig Daniels’ physician, were less supportive. According to the Daniels, while their referring physician was not against the procedure per se, he did not go out of his way to help them get treatment. In 1997, I sat at Carole’s bedside
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as the couple described the difficulties of getting their physician to refer them to Martinez: Craig: The one thing that really bothered me about this whole thing was when I was trying to get Dr. Ikeman . . . to allow us to do this. I said, “We need you to write a letter to her ob/gyn so that he can get the ball rolling on this . . .” [to get referred to Dr. Martinez]. He said, “I don’t have a problem with that, but I can’t get to it today I might be able to [do it for] you on Monday . . . Carole: They told us they’d only live maybe three days—that was Thursday . . . he wasn’t going to write the letter until Monday! Craig: So I asked him point blank, I said, “These babies could die over the weekend couldn’t they?” He said, “Well, yeah, they can.” I said, “We really need to get a letter we’re trying to see Dr Martinez today.” He said, “The best I’m going to able to do for you is Monday. I don’t have a transcription service.” You know, whatever—whatever he said! So I told him on the phone, I said, “How ‘bout if I write you the letter and you sign it?” And he didn’t have a problem with . . . [us writing the letter]. Dr. Martinez took us in [at] 4:00 p.m. in the afternoon. Friday afternoon. The end of the day. We obviously were put on the back . . . it was incredible that he actually dropped everything on a Friday evening to take us in. He knew probably that the situation was critical. After meeting with Martinez, Carole and Craig were told that their fetusbabies were extremely sick, and the likelihood of both surviving was minimal. They consented to ligation of the sicker fetus-baby in the hope of at least saving the other. The willingness of referring physicians to let patients go and to help patients go differed considerably and affected patient-parent experiences. In some cases, physicians told patient-mothers that fetoscopy was too risky or experimental. Jean Marble was 27 years old in 1997 when she was diagnosed with TTTS. During her interview a year later, she was critical of her physicians’ lack of assistance in referring her and their lack of interest in the procedure:
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Jean: [My referring physicians] . . . didn’t agree with the procedure. And when we told them that we found out about the procedure, and [told them] that this is what we were going to do, they were very negative about it. DB: Really? Jean: And um from what we had later heard, they’re not very openminded and they’re not willing to hear that there are things that can be done, and they pretty much said, “Well, good luck” and the doctor had his fingers crossed and looked at us and said, “I don’t know, but good luck.” You know like he didn’t want to hear about it, he didn’t know anything about it, he didn’t care to find out anything about it—good luck. Thought it was a bad idea. Just because it was, you know, he said it was an experimental thing. We didn’t agree, because our insurance covered it 100% and . . . [an] insurance company would not pay for that expensive of a procedure if it was an experimental procedure.10 In the preceding cases, the referring physicians knew about fetoscopy but were not willing to go out of their way to help their patients get to a fetoscopy site. Although the physicians may not have supported the procedure or may have been too busy to write a referral, they still told the family about the technique. In a more recent case, a referring physician who knew about fetoscopy to this day refuses to inform patients of its existence. In 2005, I interviewed a woman who had perhaps the worst interaction with a referring physician that I had heard. Monica Estes was 28 in 2004 when she underwent laser surgery in her efforts to help her sons struggling with TTTS. According to Monica, not only did her physician not support fetoscopy, but he even refused to tell his patients of its existence because he felt the procedures were too risky. Monica, however, was a medical professional, as was her father. Through their own research they found fetoscopy and went to Martinez for surgery. Although she eventually gave birth to two healthy sons, her (non)referring physician still refuses to inform his patients of the possibility of fetoscopy. Monica and her father are angered by such paternalism. Making it equally difficult, Monica’s father practices in the same city as her former physician, who still asks about Monica and her sons,
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though he still refuses to tell other women about the possible treatment option. Monica talked about her anger and frustration with her nonreferring physician: Monica: . . . still to this day, even though I have one-year-old healthy twins, some of those physicians still say that they do not mention to their patients that they diagnose with twin-to-twin, they do not mention the laser surgery because they think it’s too risky. And I just hold such issue with that because they’re then making the decision for the parents and the parents are not fully informed. . . . And that really obviously frustrates . . . [us] because without the surgery and the procedure we would not have our babies. And I think there are a lot of people in that same situation. DB: Yeah. When these physicians that don’t support it say it’s too risky have you heard what they see as being risky in it? Monica: The chance of miscarriage is what they refer to, the fact that they’re going in and disrupting the uterine wall and perhaps . . . breaking the water and all of the risk things that go with the surgery. They don’t think that it’s worth the risk of a miscarriage. . . . It’s very frustrating. She continued reflecting on her frustration and the fact that they still ask her father how his grandsons are fairing even though they will not inform their patients of fetoscopy. She continued: Monica: Yeah. And it’s very, very frustrating. You know, like I said they still will say, “How are your grandsons? Oh, by the way, I just had a woman I diagnosed with twin-to-twin last week.” And my dad will say, “Did you tell her about Dr. Martinez? Did you tell her about the surgery?” [They reply], “No, no. You know, I just don’t think that it’s . . . it’s just too risky. I haven’t told my patients about that.” . . . But the parents need to be the ones whos . . . weigh out the risks and the benefits. Obviously I will sit here and say it’s worth the risk but maybe somebody who lost their babies after the surgery may not say the same thing. But without the surgery I wouldn’t have them, there’s no doubt in our minds.
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At times, physician paternalism and patient rights do conflict in fetoscopy information gathering and ultimately decision making. As medical gatekeepers, referring physicians are relatively invisible. They rarely visit Holy Names and remain faceless to others in the collective. Although they are not physically at Holy Names, they are powerful allies and antagonists to fetoscopy development. In some cases, referring physicians and their patient-mothers may consider fetoscopy frightening, risky, or not fully proven; in other cases the procedures may be considered hopeful, accepted, or proven enough.11 Underlying assumptions and politics notwithstanding, patient-mother reactions to fetoscopic procedures are created in part with their referring physicians. Not only do patient-parent relationships and decision making build fetoscopy collectives and entrench its perceived appropriateness, but patient-mothers may also continue to build fetoscopy knowledge and acceptance after leaving Holy Names. For example, in the case of twin to twin transfusion syndrome, patient-mothers are asked to return their placentas to Holy Names so the pathology department can examine the outcome of surgery. With the returned placentas, pathology becomes further entrenched in the process of building a fetoscopy collective. Pathology is a medical component to the fetoscopy collective only because patient-mothers link them in by sending their placentas back to Holy Names for postpregnancy assessment. Numerous persons and elements outside of Holy Names are required for developing and assessing the procedures. Also intriguing is that many former patient-mothers send the hospital stories and articles from local papers, and some former patient-mothers volunteer at the hospital and work to promote the visibility of fetoscopy. For example, articles are compiled into scrapbooks to give new patientparents a feel for how some experiences turn out. They help build the collective by organizing events intended to promote fetoscopy and increase awareness of the procedures and the conditions it treats. In the past, patient-parents have created cookbooks with the proceeds going to the fetal therapy department, and some have organized fun walks/runs across the country. Although patient-mothers come to Holy Names for surgery and then leave, other aspects to collective building not only keep
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them in contact with the hospital, but perhaps more important, link them with one another. Patient-mother e-mails, discussions, and support groups have popped up (especially on the Internet), linking older and more recent patient-mothers. Support groups not only give patientmothers a place to share and compare experiences, but likewise create an immediate and identifiable population ostensibly supportive of procedures. Patient-mothers supporting one another can and do signify to medical providers (correctly or incorrectly) that they support the procedure as well. The Future of Building Procedures Developing fetoscopy requires establishing and mutating social structures, concepts, relationships, and goals. A fetoscopy collective needs many members to join through different paths, for different reasons. Medical providers at the hospital and patient-mother networks form the visible and invisible context of fetoscopy development. The reasons individuals pursue fetoscopy vary according to their needs; however, the assumptions, training, and worldviews they bring to bear on fetoscopy development reflect the complexity of its use and ambiguity of its meaning. Fetoscopy is many things to many people; the success of a fetoscopy collective rests on the breadth of its support base and the abilities of those within this base to reach others, normalize interactions, and convince them that fetoscopy is worthwhile. Enrollment in the collective was often the goal of talks, discussions, and meetings at Holy Names, but was not always achieved. Particularly when individuals presupposed that the information attained was unidirectional, they may have been less likely to listen or want to be enrolled. Instead of being dialogues, some conversations were viewed as conflicts in which one person sought to win over another with facts, testimonials, and education. Differences in philosophical, religious, or moral positions need not create conflict; rather cooperative dialogues may lead to more encompassing and representative collectives. For a fetoscopy collective, this may entail working the subtleties between accepting and not accepting the validity of the procedures within a local context. Collectives exist at all levels inside and outside of Holy Names, together building fetoscopy experiences and procedures through shared interactions, assumptions,
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hopes, and fears. Collective building creates networks of power, influence, and capital accumulation; in short, it builds a history, legitimizes current work, and promises future development. Through these experiences, patient-mothers and their social networks build the basis on which fetoscopy develops as a medical procedure and create an environment in which the procedures may or may not make sense to a variety of individuals. Since my stay at the hospital, the collective at Holy Names grew considerably—more physicians, more patients, more conditions. The reputation of the fetal therapy department continued to grow, as did social and cultural familiarity with fetoscopy. When I left in 1998, it was not clear what would become of fetoscopy at Holy Names. A few years later, the hospital underwent considerable renovation, which brought new fetal therapy offices and working space. With the emergence of an official and formal department, new positions were created rendering fetoscopy a professional and physical component of Holy Names Hospital. The dismantling of the fetoscopy program in winter 2005 has forced a restructuring of this fetoscopy collective. Along with Martinez, some surgical team members have relocated to University Hospital to continue their work with fetoscopy. At this new hospital, a hybrid collective of old and new will grow. Old members such as Martinez and a couple of nurses will remain, as will referring physicians and former and current patients. The new location will offer an exciting moment for this fetoscopy team: new allies and supporters from University Hospital will fill in the gaps formed by leaving Holy Names. New members will come from the same kinds of departments and experiences similar to those of Holy Names, such as labor and delivery nurses, pathologists, and surgical nurses; however, the new secular, research-oriented context will likely shape the collective considerably. Each new person will bring his or her moral assumptions and particular background that will continue to affect fetoscopy development and delivery. This new collective will no doubt create new fetoscopy procedures, and what both will look like (the collective and the procedures) remains to be seen. What is clear, however, is that in the nine years fetoscopy was at Holy Names, a collective did emerge and supporters began to stabilize the procedures. Some of these procedures are examined in the following chapter.
5 Fetoscopy and the Single Fetus: Diagnostic Embryofetoscopy, Bladder Obstruction, Amniotic Band Syndrome, and the Technological Fix
Although fetoscopy is generally used in unusual twinning gestations, it also offers single fetuses potential treatment options. This chapter highlights the varied uses of fetoscopy and its technological flexibility: any one of these uses represents a different future for fetoscopy and its ability to be more than a medical tool delivering treatment for one kind of condition. To explore the uses of fetoscopy on singleton pregnancies, I first examine two possibilities for diagnostic procedures: visual diagnosis of an anomaly and embryonic gene therapy. One approach used at Holy names offers physicians the ability to make visual diagnoses of rare fetal conditions. These diagnoses are possible because of the highly refined optics in the newest generation of endoscopes. I will also examine a second, contested, future use of diagnostic embryofetoscopy: embryonic gene therapy. Though not all physicians, bioethicists, or others may view this use as acceptable, it is a theoretical possibility. Currently, endoscopes and sampling mechanisms can access embryonic circulation at a time when it is immunologically naïve (Reece 2002). In other words, the embryo is unable to distinguish between the natural state and an added entity (e.g., therapeutics). Physicians are cautious about supporting fetoscopy in this way; however, it is discussed in the medical literature, and I will explore some of the arguments for and against its use. Following a discussion of diagnostic procedures on single fetuses, I link diagnostic visualization with a discussion of treating unusual conditions by first verifying the existence in utero, and then, in combination with operative technologies, delivering treatment to the unborn. I examine the importance of visualization in some perinatology advances, using two conditions to illustrate fetoscopic treatment on the single fetus:
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amniotic bands syndrome and bladder obstructions. Although the conditions are vastly different, they both rely on the combination of visualization and operative techniques to save or aid the developing fetus. After exploring the potential advances that fetoscopy may bring to ill or dying fetus-babies, I address the “Achilles heel” of fetoscopy: amniotic membrane rupture (Deprest et al. 1997). Although membrane rupture is not limited to single fetuses, I discuss its relevance here because, for all its technological flexibility, medical imagination, and patient-mother hope, until membrane rupture can be curtailed, this dangerous unintended side effect will continue to limit fetoscopic advancements. Diagnostic Procedures Diagnostic (embryo)fetoscopy is a rare procedure offering enhanced visualization of the fetus.1 The group with which I worked used diagnostic fetoscopy to determine if a developing fetus appeared to have a condition that was difficult or impossible to determine through other mechanisms. As noted earlier, fetoscopy as a visualizing technology was largely replaced in the 1970s with advances in ultrasound. The less invasive procedures offered visual clarity without the need to transgress the skin and enter the womb. Although ultrasound continued to improve, a few conditions remained that it could not diagnose, thus ensuring that fetoscopy would not be abandoned completely. Ultrasound is still poorly equipped to diagnose some fetal conditions. When these cases are identified, fetoscopy offers individuals another option for seeking information on their pregnancies and the health of the unborn. The process of creating fetoscopic images is technologically complex and in many ways heightens the tensions and emotions that surround the moment one first sees the fetus in utero.2 It is helpful to explain diagnostic fetoscopy as it appears to an onlooker. While I was at Holy Names, surgery appeared to begin with the insertion of the trocar. Once the trocar was inserted through the abdomen and into the womb a moment of relief was felt around the operating room (provided the amniotic membranes had not ruptured and there was no bleeding) and eyes gazed at the color monitor showing the view within. As the scope
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entered the trocar, the image eerily resembled science fiction images of starships cast into the universe. The scope (our view) took in the stainless steel, rounded inside of the trocar as if the viewer was propelled through a long shaft. As when inserting a straw into a glass of water, the amniotic fluid rose partially up the trocar. Once the scope hit the amniotic fluid, a new image emerged of a bubbly liquid racing by the scope, actually created by the scope being pushed through the amniotic fluid. Each time I witnessed these events, I held my breath. Of all the moments in surgery, this always seemed the most riveting. A confusing mixture of solitude, euphoria, and anxiety mixed in these moments, rendering me and those around me silent. As the scope progressed through the trocar, the awaited moment arrived: we entered the womb. Although the trocar entered the woman’s body minutes before, it was not until this moment that I too, felt the transgression. The bubbles were gone; the stainless steel shaft now a memory. At this point, all that lay before us was the inside of a patient-mother’s womb. With tiny movements of Martinez’s hand, we began the exploration. In these examinations, the magnifying ability of the scope rendered a tiny fetus too large to see in its entirety; as the scope moved, we saw the fetus in bits—first a toe, then a leg, an abdomen, a face, and so on. Only the memory of the physician and surgical team and the scope’s ability to take “snapshots” along the way brought the fetus into full relief. From these images a diagnosis was made. Diagnostic procedures are extremely rare. Only two women underwent diagnostic procedures during my year at Holy Names, and only a few former patients underwent it as well. The procedures are not only rare, they also vary dramatically depending on the physician conducting the procedure. Physicians use different style endoscopes and look for a variety of conditions. One of the most published physicians on diagnostic embryofetoscopy is E. Albert Reece, a pioneer in the procedure and avid supporter of its development. As Reece and others demonstrate, these procedures are rare, but perhaps rarer still are the conditions they detect (e.g., Reece et al. 1997; Quintero 2002e). It is difficult for those unfamiliar with diagnostic fetoscopy to appreciate its rarity and the anomalous conditions it detects. Rubén Quintero, also a pioneer in fetoscopy (though his research and interests tend toward
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operative techniques), illustrates the rarity of fetal conditions amenable to fetoscopic diagnoses in his book, Diagnostic and Operative Fetoscopy. In his chapter outlining the history of diagnostic procedures, he lists conditions identified with diagnostic embryofetoscopy, explaining that “The conditions listed have the common characteristic of involving anomalies of the digits, face or skin. Although some of these conditions may be assessed with high-resolution ultrasound or three-dimensional ultrasound, a positive diagnosis is usually not possible except with endoscopy” (Quintero 2002e:29). Though he and others note that future improvements to other tests and procedures may replace diagnostic embryofetoscopy (e.g., highly refined ultrasound), for the time being, diagnostic procedures offer some patients the certainty that they may want in an otherwise problematic and uncertain pregnancy. Quintero’s list of conditions that may be diagnosed by fetoscopy is shocking in its brevity—only 16 conditions are listed. These conditions are so rare and unheard of outside the professional circle of high-risk obstetrics that it is difficult, and even frightening, for most people to think of them as real (especially on reading the conditions’ physical effects on the developing fetus). Physicians using diagnostic embryofetoscopy must determine if the developing fetus appears to have the condition in question. However, an important issue remains for the fetoscopy team: What, exactly, should a fetus look like with “condition A” at a given point in gestational development? What, exactly, is the telltale sign that a fetus has the condition? At what point can the fetoscopy team feel certain? At what point might a pregnant woman share in this certainty? Although diagnostic embryofetoscopy is touted as bringing certainty to a diagnosis, the rarity of conditions and its usefulness on newer conditions invite questions of assurance. Only time and extensive use of the procedure on these and other conditions will quell such concerns. In the meantime, physicians and patient-mothers alike do what they can to understand these problematic pregnancies with whatever tools and skills they have at their disposal. The future of embryofetoscopy as a purely visual diagnostic procedure is in doubt because of the rarity of its use and the potential advances in ultrasound and other less invasive visual procedures (e.g., Hobbins
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2002). However, one of the few areas in which diagnostic fetoscopy may continue to develop is in the field of genetic therapy. Diagnostic approaches using adapted needles can reach the embryo-fetus very early in first-trimester gestation. It is during this early period that the embryo may be more receptive to alterations in its makeup. In explaining the power of this technology, Reece writes, “Its unique feature is its ability to permit prenatal diagnosis and access to the embryonic circulation during the first trimester of pregnancy” (Reece 2002:21). He continues, “Needle embryoscopy can now permit us access to the fetus very early in gestation at a time when the fetus is immunologically naïve, thus paving the way for first trimester interventions” (Reece 2002:21). Although gene therapy is one of the exciting, and ethically sensitive aspects of needle embryoscopy, Reece offers three compelling reasons to pursue its development: first, access to the fetal blood may allow genetic analysis earlier in the pregnancy and reduce the anxious waiting period other prenatal technologies such as amniocentesis (c.f., Rothman 1986) require; second, it may offer better and clearer results than some current prenatal technologies; and finally, he suggests that stem or gene cell transplantation may allow any number of early diagnoses on a greater number of conditions (Reece 2002:25). While he notes that the applications of genetic therapy may be the most profound use of the technology, he also clearly cautions that “There are many unanswered questions, which must be clarified in the future” (Reece 2002:26). In fact, Reece has been a proponent of ethical examination of this technology since the early 1990s when he coauthored the article, “Embryoscopy, Fetal Therapy and Ethical Implications” (Reece and Homko 1994).3 Another fetoscopy team is also looking to a future in which diagnostic embryofetoscopy may be used to deliver either fetal stem cell therapy or genetic therapy. Surbek and colleagues argue that “embryofetoscopy can be a useful tool for targeted administration of cells or genes to the first trimester fetus by injection into the circulation, the peritoneal cavity, the liver or even the yolk sac. Furthermore, embryofetoscopy guided umbilical cord puncture and injection into the circulation was possible [in our studies], though not without difficulties” (Surbek, Tercanli, and Holzgrove 2000:304). All sorts of difficulties plague fetoscopy—some
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technological, others moral—nonetheless, the procedures continue to advance with these and other research groups. As perinatologists continue to push earlier into embryonic gestation and access blood and its components, a myriad of new questions arise. Many fetoscopists have unanswered questions, as well as bioethicists and politicians. What conditions might warrant such interventions? Who will fund them? Who will undergo them? Although diagnostic needle embryofetoscopy offers a variety of information, as indicated previously, the most controversial use, possible gene therapy, may prove the catalyst to launch it forward or to harness its development. However, Holy Names only offered diagnostic fetoscopy and therefore we never considered its use for genetic therapy (as far as medical protocols). We did, however, come to see how profound a visual diagnosis may be for caregivers and patient-parents alike. While at the hospital I had the fortune of meeting Linda Meyers, a young mother who was carrying a fetus with a potentially lethal condition in which much of its face and brain were not developed.4 When she arrived in the hospital, I was informed of her fetus’ rare condition. Our task was to see if the developing fetus appeared to have these characteristics. At 20 years old, Linda was one of the youngest patient-mothers that I met, and with a fetus suspected of having this condition, she was one of the most disturbing to interview and observe. I followed Linda into surgery and stood with the fetoscopy team as the surgeon carefully guided the diagnostic scope around the developing fetus. Although the fetus had some extreme, graphic abnormalities, it did not appear to have the condition in question. I stood in the operating room and worried about her reaction to these other problems. Though her fetus-baby did not have the condition feared, it did have something perhaps equally significant. The following day I met with Linda, after she had been informed of her diagnostic outcome. Her spirits were high as I sat down to conduct the interview. As we spoke it became clear that her main concern was not that her fetus-baby had a disfiguring condition but that her fetusbaby did not have the particular condition in question. The condition she feared had taken on such a horrific shape in her mind that she could not bear the idea of having a child with such malformations.
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As I listened to Linda’s story, she held out a pile of collected medical papers on the condition that her referring physician had given her. She asked me if I wanted to look at them. Leafing through the papers, I gasped. The images of mangled fetal faces were unlike anything I imagined from the sanitized medical descriptions. I apologized for my gasp, yet the shock and horror I clearly felt did not appear to bother Linda, who simply stated she could not imagine producing such a disfigured child. Diagnostic procedures offer a strange sense of certainty: in the visual acuity of a knowledgeable physician and the pregnant woman’s knowledge of what she can and cannot bear for a future child. Operative Fetoscopy on the Single Fetus: Bladder Obstruction Fetoscopy on the single fetus goes beyond diagnostic assessments to surgical approaches on singleton pregnancies with rare conditions for which no other in utero treatments exist. One of these ailments is bladder obstruction, a condition in which a fetus develops a blockage preventing urination. This condition may occur in a number of ways, all of which can lead to increased fetal morbidity and mortality.5 Two dangerous situations are particularly important to recognize: first, the developing urinary tract may be harmed by the pressure of increased urine production with no way to expel it; second, because urine is an important component in amniotic fluid, without it the fetus may not be able to develop properly (notably, a lack of fluid may prevent proper lung development). Operative fetoscopy can enter the fetal urethra to visualize and clear the obstruction. Although not all blockages can be removed, it is hoped that operative fetoscopy will give physicians a better visual understanding of the ailment and the ability to fix it in utero before profound side effects occur. Sarah Addleson underwent surgery in 1995 for a bladder obstruction in her son. The case was unique because he was a fraternal twin, whose developing sister would be put at risk by any surgery to save him. For example, surgery could trigger preterm labor, thus placing the healthy daughter at risk for premature birth and the numerous ailments affecting premature babies. After weighing the risks, Sarah underwent fetoscopy twice in an effort to save her son. Both times the surgery was
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unsuccessful. After the two failed attempts, Sarah decided not to undergo further surgery. Ultimately, she continued her pregnancy and delivered her babies. Her daughter was healthy, but her son lived only a few hours. She described the situation: Because he was just so filled with fluid and everything and his lungs weren’t developed because there wasn’t enough amniotic fluid in his sac [and he was very ill]. . . . So he was on life support and we kind of made the decision that . . . [we wanted] him off [dialysis] because they said he’d never really lead a normal life. And he would possibly have to have [a] kidney transplant and be on dialysis the rest of his life, and we just didn’t think that would be fair.
I asked her if she meant fair to her or to her son. She said that it might not be fair to either child; in fact, her daughter might be the only good kidney donor for her brother. Sarah’s case was particularly sad as she worked to balance her son’s health with her daughter’s health both in utero and into an imagined future. But she continued, “I don’t regret doing it though because they made us aware that there was a slim chance that it would work because it was a very new type of surgery that he was doing. But we wanted to give the baby every opportunity if he [could] correct it in utero then that would have been great. But we knew the odds going in weren’t very good.” Deanna White, on the other hand, was one of the first women to undergo surgery for her son’s bladder obstruction and overcame many technical setbacks before finally giving birth to a nearly healthy son. Her story is compelling, and I quote our interview at length: Deanna: [The doctor tried to clear the blockage in the urethra but] his urethra was already too curved, and he said that he got all the way up to the valve and could see . . . and the little scope popped and it broke. So, he had to stop. And then I had to wait several days, I don’t remember how many days before they could place the shunt, because the water had to build back up and it was kind of slow. . . . So then they placed the first shunt. And then I came home and I went for ultrasound twice a week, and during one of those ultrasounds she saw that the shunt had slipped under his skin, so his bladder was draining into his abdominal cavity. So, I went back up to . . . [the hospital] and had another shunt placed to drain it . . . DB: Okay.
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Deanna: And then . . . when they did that one, my water broke, so. And I stayed . . . there for about a week. And then, until everything kind of leveled off. Until my contractions stopped and the bleeding slowed down. And then I came back . . . [to my home and regular hospital] and stayed there until I was 34 weeks pregnant and then they induced labor. Although Deanna had already been through a lot medically and emotionally while undergoing fetoscopy, the return to “home” meant the return to her local hospital. Deanna longed to go home, where she had two young children, but at the same time she also wanted to give her in utero baby the best chance at survival. To create the best chance for her in utero son, she stayed in the hospital where she and her son could be medically monitored. Yet even this did not guarantee a safe, healthy delivery. Continuing, she said that one day they wanted to draw a sample of some fluid that appeared to be building up: Deanna: So they tried to get a sample [of the amniotic fluid] by amniocentesis, putting the needle in? DB: Umm-hmm. Deanna: And what she thought all this time [what] had been a pocket of water was actually a pocket of blood, so she didn’t know what was going on. So she said, well, we need to induce labor because something’s not right in there. So, it turned out that that was just an old pocket of blood that had not gotten washed out because no water had been circulating in there. DB: Uh-huh. Deanna: And so, she induced labor and he was born and initially everything was fine but . . . she thought his lungs were pretty mature by the ultrasound because his chest measurement was good. But after he was born he wasn’t breathing and they put him on a respirator and [hoped] he would do fine, and finally they determined that his lungs weren’t going to be big enough to support him. And they prepared us for the worst and everything. And . . . for about three days they didn’t know whether or not he was going to make it. And then he started coming back and he stayed in the hospital for about . . . four weeks after he was born. And then he came home. And he was in and out of the hospital. He was on a feeding tube.
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Which, I think, that was more of a precaution. And he kept pulling the feeding tube out. So they put in a g-tube. And we never used that. He’s always eaten fine. . . . his left kidney . . . [is gone] . . . you can’t even find it on ultrasound anymore and his right kidney is real big and which is good, I guess. They say it kind of makes up for the other one. And his kidneys [sic] are functioning fine. All the labs have been really good. He’s almost three now. DB: Wow. Deanna: So he’s doing great. Although Deanna had to go through a number of procedures, she ended up with a son who, though lacking a kidney, is able to lead a relatively healthy life. The trauma of the surgery and the unknown paid off for Deanna. Operative Fetoscopy on the Single Fetus: Amniotic Band Syndrome A second condition that uses operative fetoscopy techniques combined with visual diagnosis is amniotic band syndrome. The condition is still not well understood, and competing medical theories exist (e.g., Schwärzler, Moscoso, V. Senat et al. 1998). In his overview of contemporary fetoscopy uses, Quintero reminds physicians that, “Although the natural history of amniotic bands is not well known, there is evidence to suggest that limb amputation many result from constricting bands that progressively interfere with blood flow and result in distal necrosis” (Quintero 2002c:94). In other words, the tissues form a type of tourniquet around the fetus, rendering it unable to grow (e.g., Sentilhes et al. 2004). Although it is possible to detect amniotic band syndrome with ultrasound, it is impossible to treat it with this noninvasive technology. Amniotic band syndrome is a unique condition for operative fetoscopy because it is the first non–life-threatening condition to be treated (e.g., in the first case, the band wrapped around a limb of the fetus, putting it at risk for amputation, but not death). With amniotic band syndrome, the physician uses miniaturized scissors to cut the bands, thus freeing the fetus. Once freed from the constricting bands, the fetus is left to continue developing. Although the bands are released, scarring and (rem-
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nants of the bands) may remain. When amniotic bands lie across the face, for instance, the fetus may have facial abnormalities from the amniotic band that already occurred before the releasing of the band. Less obvious physical reminders may occur as well. One baby who was treated fetoscopically to remove the band encircling his ankle was born with a slight indentation where the band had been. Although surgical risks do exist for cutting the lesions in amniotic band syndrome, patient-parents and their caregivers argue that it may save a fetus from in utero amputation. Gail Evans was a 30-year-old patient-mother carrying a fetus-baby with amniotic band syndrome. She described her surprise at hearing about the condition affecting her fetusbaby and her willingness to find someone to treat it: It was in July, 1997 on the 27th, was the first ultrasound. That was right at 20 weeks, and she was checking and sure enough, they found out that it was a boy and she says, “I’m almost 99% positive it’s a boy.” And then she spent a long time around the legs and of course, we didn’t notice anything. We really couldn’t tell and then [she] left the room and brought in the doctor and he said, “We found something that looks funny and looks different. We need to send you to a specialist.” And they showed us what it was. It looked like he had a boot on his foot. It’s a swollen foot. And of course, I thought, oh, he’s got club foot. Of course, it was horrifying to me to even think something was wrong. . . .
The following Monday they went to a specialist to find out what was wrong with their son. She continued: And when we went into the specialist, they were the ones that found—that saw the band. I guess the equipment was a little bit more specialized or something. So they saw the band and they diagnosed it. And he basically—Dr. Terrace—was the specialist and he basically told me, he said that there was really nothing that they can do for this. That more than likely, he’s going to be born without a foot. And he told me, he said, you know, you need to make the decision if you want to terminate this pregnancy or not, which, of course, I was horrified that something was going to be wrong with him, but that never, ever crossed my mind. That wasn’t an option to me. I mean, he was a perfectly normal baby. This just happened. So we had—that was a Monday and he took videotape of the ultrasound that showed the band and everything and he said, “I’ll check around.” Because I immediately said, is there anything out there that they can do. Here is something that looks like it could be taken care of. Clipped or something. And he said “I’ll let you know,” but he didn’t give us much hope that there was anything.
Following the appointment, she and her husband were left to decide what to do. The specialist sent the video to Martinez, who after reviewing the
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case, felt he might be able to treat the condition with his operative techniques. His plan was to enter the womb and, with miniature scissors, cut the bands, thus freeing her son. She continued: And we found out Monday that they wanted to do the surgery and wanted us to come . . . for pre-op on Thursday, which I was totally shocked. My husband was out of town. My worry was, I needed to know—and I was talking to, I think, Dr. Martinez’s office manager at the time, and I said I need to know facts about the surgery. What’s the possibility of me going into labor and losing him, because that wasn’t even—I didn’t even want to do it if there was a real high risk. But that’s what was going through my mind at that time. And Dr. Martinez got on the phone with me and talked to me about a half an hour and just told me everything that would happen and the risks. He said between 5 and 10%, but at that point, we had had so many family and friends from all around just praying for us that in my mind, I knew this was the right choice. That this was opened up to us. That he was just going to be the second person to have this done. I knew that this was basically a miracle sent from God, that this was able to happen for us. So I called my husband that night and I said I want to do this, and I feel right that this is right. So he came home and we left for [the hospital] . . . that Wednesday. So, we went [to] pre-op and had the surgery Friday.
As Gail notes, the time between discovering the problem and making the decision to undergo surgery was very short: on Friday she received a diagnosis without much hope for treatment; the following Friday she was undergoing surgery. Even though she was among the first handful of patient-mothers to undergo the procedure, she firmly believed she was doing the right thing. Her certainty and belief that the surgery was “a miracle sent from God” and the quickness of her decision to save her son’s foot weighed against the risks of losing the pregnancy as a result of the invasiveness of the procedure. The decisions rested heavily on Gail. She continued: I left the hospital Sunday, I believe, and then drove home Monday. No, maybe we—let me think. Maybe we drove home Tuesday. Yeah, I think I drove home Tuesday from the hospital, so I mean, it was so fast, it was almost overwhelming, because I can remember getting back to my mom’s house after driving all day, and of course, I was in a lot of discomfort, but I remember lying on the couch just starting to bawl. Because everything just happened so fast. The emotions just hit me after that. It was just a shock that all happened to me.
The immediacy of some of these procedures is what some women may find particularly traumatic. With each day that passes, fetal health may decline to the point that even surgery cannot help the situation. Perhaps worse, there are no guarantees that the fetus will survive with surgery;
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risks are involved, as with any surgery. Women electing to undergo fetoscopy thus have to balance the health of their fetus-baby with the potential harm to it and to herself should surgery not go as intended. As noted previously, risks are defined differently depending on an individual’s background and assumptions. Although not limited to the study of bladder obstruction or amniotic band syndrome, physicians Morales and Bermúdez offer a study of and statistics tracking fetoscopy at one clinic. According to their study of the fetuses on which surgery occurred, 63 percent survived. The physicians felt this was a good statistic given the highly compromised conditions of the fetuses. They explain: While an overall neonatal survival rate of 63% in a patient population with pregnancies complicated by a potentially lethal condition is in our opinion very encouraging, this surgical approach is certainly not free from serious complications. Although 17% of patients experienced a significant complication, mainly rupture of the membranes and/or membrane detachment, one maternal death was recorded from complications of an amniotic fluid embolus. Patients who are candidates for this surgical approach must therefore be counseled regarding the risks and benefits of endoscopic fetal surgery. (Morales and Bermúdez 2002:126)
The risks of surgery are not limited to the fetus, but extend to the woman who carries it as she undergoes anesthesia and emotional upheaval. In the rush to decide whether or not to undergo surgery, much emphasis is placed on the fetus. As Monica Casper notes in her work on open fetal surgery, this attention may overlook the very real dangers a woman faces when consenting to surgery on her body in an effort to treat the fetal patient (Casper 1998). As Morales and Burmúdez noted, one woman died during a fetoscopy procedure from an amniotic fluid embolus. Although the death of an otherwise healthy woman trying to save her pregnancy is tragic, many more patient-mothers experience membrane rupture, a significant health risk for a woman and her developing fetusbabies. The Technological Fix: Amniopatch Contemporary medicine relies heavily on technology to “fix” patients and make them well. However, such fixes may not always work, and not all conditions can be fixed. During my time at the hospital, amniotic membrane rupture was the most common unintended side effect that I
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witnessed with fetoscopy. In these cases, when the trocar is inserted or removed from the womb, the amniotic sac ruptures and fluid slowly begins to leak out the vagina. When this occurs, many devastating outcomes are possible, including maternal infection and fetal death. Until such ruptures can be controlled or minimized, general fetoscopy acceptance remains elusive at best. A number of techniques have been developed, to control amniotic fluid leakage; however, the most promising approach appears to be the “amniopatch” (e.g., Lewi et al. 2004). The amniopatch, consisting of platelets and cryoprecipitate (the “patch”), is injected into the womb in the hope that it will find and seal the leak. The sac, or colloquially termed “womb,” encapsulates the developing fetus, acting as a protective barrier to the outside world (maternal body). It is within the sac that the fetus is bathed in amniotic fluid and receives nutrients through its umbilical cord. The amniotic membranes composing the sac are unique. Although they serve to keep the fetus safely within the precious amniotic fluid, they are relatively easy to puncture and appear to heal nicely once the penetrating tool (e.g., trocar, amniocentesis needle, needle embryofetoscopy) is removed. For example, amniocentesis (a relatively common procedure) involves a needle entering the amniotic sac and withdrawing amniotic fluid. When the needle is removed, the chance of membrane rupture is 1.2 percent (Quintero 2002f:97). On the other hand, the risks of membrane rupture increase with diagnostic and operative fetoscopy to 3 to 5 and 5 to 8 percent, respectively (Quintero 2002f:97). The difficulties facing operative techniques tend to settle on the risks of membrane rupture and how to minimize or fix it. Many research groups have attempted to curtail the incidence of rupture and to find new methods to heal tears when they occur. Ironically, with the amniopatch, the process causing the problem (i.e., an in utero puncture) is also used to solve it. In a report on the amniopatch, one physician writes: Although the membranes may seal spontaneously in this setting [footnotes], patients may continue to leak fluid through the vagina and are at risk for pregnancy loss. Successful prolongation of pregnancy after . . . [membrane rupture] is complicated by the fact that the invasive procedure responsible for the complication is typically performed in early pregnancy. The overall perinatal mortality of . . .
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[membrane rupture] managed expectantly is 60% . . . [footnotes]. Nearly onethird of these deaths occur in utero. Pulmonary hypoplasia occurs in 50% of cases diagnosed prior to 19 weeks . . . [footnote]. Serious sequelae in surviving infants include blindness, chronic lung disease and cerebral palsy. (Quintero 2002f:97)6
As noted earlier, amniotic membrane rupture can prove a major health risk to fetuses and patient-mothers undergoing invasive prenatal procedures. Thus, the development of a technique to curtail leakage will not only benefit those practicing and undergoing fetoscopy, but will also aid in a number of other minimally (yet nonetheless) invasive prenatal technologies. With the amniopatch, the fetoscopy team once again enters the amniotic sac in an effort to stop the leakage. Although reentering an already leaking amniotic sac may seem counterintuitive, in fact, it has proven to be a successful approach to a medically induced problem (e.g., Lewi et al. 2004; Quintero et al. 1999; Quintero et al. 2002f). In an effort to understand better how amniotic membrane ruptures may be fixed, Lewi and colleagues analyzed 11 cases in which a patientmother underwent an amniopatch. They found that 10 out of the 11 cases were sealed by the amniopatch (five cases occurred after amniocentesis and six after fetoscopy; see Lewi et al. 2004:354). Unfortunately, although the treatment seems to be successful, they note it does carry significant risks, a sad reminder that for all its development, fetoscopy continues to be plagued by unintended and unwanted side effects. In the 11 cases reported, 3 ended in fetal death. Though it is difficult to attribute the death directly to the amniopatch, it is possible that the amniopatch may lead to some serious problems for the developing fetus. The amniopatch appears to be gaining medical acceptance; however, not long ago (within the past 10 years) some women tried the procedure with very little statistical evidence to offer them comfort. These first few cases are deeply compelling, as one cannot help but wonder what would lead a woman to consent to such experimental medicine? Returning to Jenny Galto (she lost her son, Timothy, shortly after battling her constipation), she recalled being one of the first group of patient-mothers on whom the amniopatch (or a prototype to the current amniopatch) was used. Unfortunately for Jenny, only three days after the amniopatch, her
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baby died. As she told me her story, I wondered about the lack of medical statistics to offer her some certainty. When I asked her about it, Jenny replied, “it didn’t bother me because I knew it was a new process and it wasn’t—it was something new for . . . [the physician]—something that hadn’t been done before, so you wouldn’t expect 100% in the beginning.” She continued, “it didn’t bother me. Any kind of hope was fine. It didn’t bother me.” Jenny’s case was unusual in that it occurred so early into the development of the amniopatch. While physicians continue to seek ways to improve their medical technologies, the women undergoing the processes must also try to make sense of what is happening to their bodies. While a physician may view a loss as resulting from the wrong mixtures of blood materials, a patient-mother might see the death as something to which she was an accomplice. The relatively sterile medical description of what led to the death at times contrasts starkly with the emotionally laden maternal experience. As our interview proceded, it became clear that Jenny was racked with guilt over the death of her son and sought what she might have done to lead to the death. Her willingness to claim culpability at such an early stage in medical technology development is worrisome, and the aforementioned accusation by the nurse that she somehow got what she deserved is horrifying (see chapter 3 for details on Jenny’s experience with the nurse). Instead of considering the possibility that the medical team was unable to offer her a successful treatment using medical technology at an early stage of development, she instead went to the cultural narrative of maternal blame. In the end, she never asked her physicians if her walking to the bathroom and battling constipation may have hurt her fetus-baby. With the general success of the amniopatch, one research group decided to try it on leakage that did not occur following fetoscopy, but on spontaneous ruptures. Unfortunately, though the amniopatch seemed to help in some physician-induced ruptures, it did not appear to help in cases in which the membranes ruptured on their own. As a technological fix, the amniopatch appears to assist only in medically induced problems. Following study of the two types of ruptures, the research team determined that the leakages (i.e., physician-induced and spontaneous
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rupture) appear different. After their study the team determined that for spontaneous ruptures a new surgical technique may be needed, but for those leakages caused by fetoscopy they are hopeful for the amniopatch: In the past five years, we have gained significant experience in the clinical understanding and treatment of . . . [ruptured membranes]. From our work, we can conclude that iatrogenic . . . [ruptured membranes] is a different entity not only etiologically, but also in its clinical behavior and response to therapeutic measures. Our current success rate with the amniopatch allows us to suggest that iatrogenic . . . [ruptured membranes] should no longer be viewed as a devastating complication to pregnancy. Instead, the amniopatch may become standard treatment for this unusual but frustrating complication of prenatal intervention. (Quintero 2002f:105)
The amniopatch may overcome the Achilles heel of fetoscopy; however, while research groups are excited by its potential, they are aware of the difficulties of finding the right type of patching fluid that will fix the tear and not hurt the fetus. Although fetoscopy can tragically lead to membrane rupture (medically termed iPPROM), the physicians still continue searching for a technological fix to a technologically induced problem. As one of the fetoscopists using the amniopatch, Martinez joins many other surgeons hoping that this technological fix will enable further fetoscopy development. When I asked him about the amniopatch, he readily saw a potential for endoscopy (the visual component of fetoscopy) not only because it clearly demonstrated the differences between spontaneous and fetoscopy-related ruptures, but also because the more physicians learn about the physiology of pregnancy and its problematic outcomes, the better situated they will be to make further advances. Reflecting on endoscopy used with the amniopatch, he continued: So, endoscopy has given us the opportunity to characterize a major health problem [membrane rupture] and hopefully it will also allow us the opportunity to find a way to treat this. If we find that, the history of obstetrics will change because the number of lives that will be saved, the number of dollars or whatever the currency in the particular country is that will be saved, will be enormous. So, it’s actually quite interesting how working on something that is extremely rare, select, not in high demand and exclusive—whatever other adjective we want to use about fetoscopy, it may prove to be the technique and the approach that was necessary to solve a public health problem. And that may be the history.
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One particular use of the technology may not ensure its place in obstetrical history, but fetoscopy may be the catalyst to other advances, giving it a small, albeit, important role in obstetrics and high-risk pregnancy. Fetoscopy and the Future Single Fetus Part of the wonderment surrounding fetoscopy is the uncertainty about where it is headed. It may turn out to be the procedure to deliver gene therapy to dying fetuses, it may turn out to be the one approach offering surgery to orphan diseases in utero, or it might offer the visual acuity needed to decipher different kinds of amniotic membrane rupture and lead to advancements in maternal-fetal health. There are so many options that the difficulty seems to be curtailing medical excitement to make room for caution and critique. Each attempt at palliative surgery carries risk; each advance in visualization similarly transgresses the boundary to a woman’s womb and may also invite her to see inside and join in the diagnosis or explanation of what went wrong. Yet these visuals should not be romanticized. Of the women I interviewed who watched their surgeries, most had mixed emotions of excitement and fear. The cognitive disconnect between her feelings about her fetus-baby and seeing it on a color monitor may prove more of a challenge than anticipated. The experience, as reported by one patient-mother, was simply “surreal.” Fetoscopy is boutique medicine looking for a use. And the uses are there. Those described previously are rare because the conditions are rarer still. However, as an operative technique, such as in bladder obstruction and amniotic band syndrome cases, fetoscopy appears more probable. The procedure can identify the anomaly and, with miniaturized surgical tools, offer relief to the embryo-fetus. Yet just as watching one’s own fetus-baby on a television monitor should not be romanticized, nor should boutique medicine treating rare conditions. Although the procedure may save some fetus-babies, it does carry risks and must be approached with caution and an awareness of, and respect for, the painful unintended consequences that occur when procedures do not go according to plan. Physicians are aware of the physiological dangers associated with fetoscopy, and are working to understand the etiology of pregnancy and
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how dangerous situations may be altered or fixed. One of the greatest advantages that fetoscopy brings to obstetrics and perinatology (as opposed to individual women) is the ability to see where amniotic membrane rupture occurs and to develop a procedure, the amniopatch, that may fix some of these tears. While many Science and Technology Studies scholars remain cautious of the “technological fix” or the use of technology to fix the problems caused by technology, it is clear that in the case of the amniopatch, fetoscopy may prove to overcome the medical problems that have plagued its use, leading to unanticipated pregnancy complications, and loss (on technological fix, e.g., see Weinberg 1966, Winner 1978). Though there are many reasons to be cautious about fetoscopy development, the amniopatch and its ability to assist in troubled singleton (and multiples) pregnancies make convincing cases for physicians to continue developing procedures. Yet the cases described earlier (with the exception of the amniopatch) are extremely rare, boutique medicine. When attention is directed towards the uses of fetoscopy on identical twinning there is even further reason to feel the need to press forward, medically. However, further development must be balanced with the different needs patient-mothers bring to their surgeries and fetoscopic experiences. Fetoscopy on identical twins is more common and offers a more entrenched history than for some singleton pregnancies; however, the better known history does not completely alleviate the anxieties felt by many of the patient-mothers carrying twin gestations. These women must also reconcile their sociocultural contexts with the problematic pregnancy at hand. The next chapter examines how operative fetoscopy is being used on twinning pregnancies and explores the issues surrounding women who consent to fetoscopy.
6 Ligation and Twins: Making and Choosing Twins in High-Risk Pregnancy
Although fetoscopy is minimally invasive physically, as demonstrated throughout this book, it carries considerable sociocultural concerns, hopes, and upheavals; perhaps nowhere are the consequences of fetoscopy decision making more troublesome than in its use to treat certain high-risk twin gestations (e.g., Milner and Cromblehoime 1999). With twinning and fetoscopy, unusual physiological entities (i.e., twins) are made problematic by competing notions of what it means to be a twin and what it means to be parents of twins. Although twins are often greeted with excitement in Western cultures, they are not always understood and may be just as easily considered a physiological mistake as a joyous surprise. In any event, most twin pregnancies do end with healthy babies and, although parents may be surprised to be having twins, they are generally able to incorporate a second baby into their lives. Twin gestations bring certain questions to bear on fetoscopy decision making, including defining what is contained within the pregnancy (e.g., a baby, fetus, or tissue) and determining appropriate uses for the fetoscopy procedures (e.g., ligation or laser surgery). As examined in social scientific literatures, and as demonstrated within this work, relationships between parents and their in utero entities are crafted over time and often mediated through medical interactions such as listening for a heartbeat or viewing an ultrasound (e.g., Taylor 1998). These interactions help make apparent the reality of the unborn. With these and other activities, many parents slowly come to think of their fetus-babies as having characteristics associated with personhood and assume rights and moral claims for them; at the same time, parents can lose these claims of personhood if fetal development is incompatible with their
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assumptions of acceptable development (e.g., Landsman 1998).1 Parents who begin to think of their in utero entities as potential persons or other valued entities may find their beliefs challenged and altered if an ill or dead baby is delivered (e.g., Landsman 1999). In most pregnancies not ending in termination or other loss (including illness), the construction of in utero identities is relatively unproblematic. The cultural assumption is that a pregnancy develops along a positivistic path culminating in the birth of a healthy baby (e.g., Landsman 1999; Layne 2000). This narrative is insufficient for some pregnancies that end in the birth of a disabled or ill child and for women who experience pregnancy loss, often unanticipated pregnancy outcomes. To illustrate the importance of social networks and cultural contexts in helping patients determine what a pregnancy entails, sociologist Leonard Kovit examined three hospitals in which he explored the concept of “babies as social products” (Kovit 1978). Kovit showed that products of conception (e.g., babies and fetuses) may be defined in a number of ways (e.g., legal, biological, clinical); however, in practice these definitions are not always clear, followed, or agreed on by medical workers (Kovit 1978). Kovit examined hospital practices, including who labels a product of conception (e.g., fetus and baby) and where it is sent following birth or removal from a mother or patient, to understand how others’ views and actions impact the creation of the baby as a social product. For example, a dead baby may be sent to pathology, the morgue, or a nursery. The decision of where to send the dead baby depends on the assumptions and training of those who come in contact with it. Although Kovit acknowledges that other entities and objects are procreative products (e.g., the placenta), his analysis examines fetuses and babies because they are “[t]he products of procreation which are of the most central significance both to participants (doctors and mothers) and sociologists” (Kovit 1978:347; for criticisms of production analogies to reproductive processes, see, e.g., Martin 1987). However, as I demonstrate in this chapter, the use of fetoscopy brings with it more entities—all of which may be of significance to patient-mothers and those who care for them. By examining the multiple relationships within twinning pregnancies, it is possible to identify the complex decision-making patterns of women
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consenting to fetoscopy as they determine what it is their pregnancies hold and what relationships and responsibilities govern their existence. Two types of relationships are often envisioned as evolving in twin gestations: first, a relationship between the woman and each fetus-baby; and second, a relationship or bond between the fetus-babies. The kind of treatment options patient-parents pursue depends in part on how they envision these relationships and determine their parental responsibilities toward them. Complicating matters are variations in how patientparents, their medical providers (e.g., a physician, nurse, and ultrasound operator), and social networks define what kinds of entities make up particular pregnancies and determine how to care for them. The wideranging views of fetoscopy decision making and twin gestations create an often tension-filled experience for patient-parents as they determine what procedures they are willing to undergo to save or otherwise recreate their pregnancies. Although a number of in utero conditions may affect twins, as noted earlier, two conditions amenable to fetoscopic treatment are twin-to-twin transfusion syndrome (TTTS) and acardiac twinning (these conditions are addressed in detail later in this chapter). With both conditions, in utero entities are harmed by abnormal blood shared within the placenta. Although identical twins may share blood through the placenta, in both TTTS and acardiac twinning the sharing is unequal. One twin bloats with excess blood while the other slowly grows anemic. The uneven bloodflow leads to many physiological anomalies and may contribute to the death of one or both fetuses. Unfortunately, treating these conditions may entail undergoing procedures that also threaten the livelihood of one or both fetus-babies. At worst, TTTS and acardiac twinning represent the in utero doppelganger: the shadowy mirror of the self attempting to take over the life of another (c.f., Strauss 1996). While undertaking my research, I was reminded time and again that in the event that one twin dies, it remains important to recognize the pregnancy as a twin pregnancy and the surviving baby is still a twin while its mother is always a mother of twins. Although this realization clearly helped some parents who grieved a lost child, stressing the twinness of a surviving fetus-baby may also add to the pressure some parents and their older children feel in both deciding whether to undergo fetoscopy
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and, importantly, determining if a particular procedure is acceptable and living with its sociocultural and physical effects. It is also important to note that generally the twinness of a pregnancy was stressed in cases of TTTS; the medical professionals did not consider it appropriate for cases of acardiac twinning (though the patient-mother might). In TTTS the tensions patient-parents face are painful, but relatively straightforward: abnormal placental circulation renders the fetus-babies unable to develop properly, and one or both may be harmed or die. More akin to “normal” in utero losses, TTTS losses are often viewed as otherwise healthy fetus-babies that are victims of disproportionate bloodflow. One patient-mother carrying fetus-babies suffering from TTTS lamented, as I sat beside her hospital bed, “There’s nothing wrong with me. There’s nothing wrong with the babies. There’s just something wrong inside.” With TTTS some patient-parents struggle with negotiating, anticipating, and ultimately defining the relationship existing between the in utero entities as they wondered how the twins may or may not develop in relation to each other. While patient-parents may make difficult decisions regarding potential surgery they always knew what comprised the in utero entities: sick or dying fetus-babies. Unlike fetus-babies with TTTS, in acardiac twinning, one fetus-baby is potentially viable and the co-twin, the acardius, is significantly malformed. Medical terms used to describe in utero entities in acardiac pregnancy are problematic. For clarity, I use acardius to refer to the nonviable entity (thereby not invoking sibling or personhood status) and fetus or fetus-baby to refer to the potentially viable entity. Medical journals reporting on acardiac ligation describe the acardius with a variety of medical terms, including acardiac twin, acardiac acephalus, acardius acephalus fetus, parasitic fetus, acardiac-acephalus twin, anomalous twin, and perfused twin. Patient-parents, on the other hand, used such terms as bad baby, tissue, baby, child, it, him, sister, brother, twin, and acardiac twin. The variety of terms reflect the multiple ways in which people come to understand particular acardiac pregnancies as they are experienced by patient-parents and caregivers alike. Although physiologically different from TTTS, acardiac twinning also raises similar concerns of negotiating, accepting, and defining the relationships within the pregnancy. The acardius requires that patient-mothers determine
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what it is they carry so that they can decide how to relate to it. As they struggle with these decisions, the acardius also exists in a “twinning” relationship. Patient-parents must incorporate this relationship into their decision making. Like patient-parents coming to terms with TTTS, patient-parents with acardiac twinning also determine how the entities relate to the world around them and what these relationships may mean. The acardius is a significantly malformed in utero entity. As the name implies, the acardius lacks or may have only a rudimentary heart. In addition, it frequently lacks a head and arms (among other anomalous physiological characteristics). With these malformations, the acardius is incompatible with life ex utero. Even though an acardius may lack body parts crucial to ex utero life and attributes associated with humanness and personhood, some patient-parents struggled to define and determine how to experience the relationship they and the other fetus-baby had with the acardius. Unlike TTTS, an acardiac pregnancies’ viability or nonviability was more certain; however, less certain is what the nonviable entity meant to the patient-parent, as well as to the other fetus-baby. Interviews with patient-mothers, their families, and medical providers revealed that many ascribed the acardius with identities that were simultaneously subject and object, human and nonhuman. The vacillation between subject and object, human and nonhuman, dead and alive, is not reserved for acardiac twinning. In fact, this blurring of dichotomous boundaries exists for many individuals—in comatose patients, those with cognitive disorders, and even the newly deceased these stark boundaries defining personhood and nonpersonhood can be indistinct. The difficulty is knowing what is lost in these pregnancies. How and when does an acardius or the pregnancy containing it represent loss? Professor of Family and Social Science, Pauline Boss, refers to such loss as “ambiguous loss” (Boss 1999). In these cases it is not clear whether a loved one is dead or alive. In her work, she identifies two kinds of ambiguous loss: first, when a person is physically present but his or her mind or other facility is nonfunctioning and thus the person cannot participate in the griever’s life; and second, when a person is physically missing and the loved ones left behind do not know if their loved one is alive or dead (Boss 1999). The acardius brings a special complexity to
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ambiguous loss: without a heart, head, and other body parts necessary for life, it is possible to argue, it was never alive or human. Unlike a patient suffering dementia or a soldier missing in battle, the acardius may never have achieved the threshold at which it was human or the further threshold at which it was a person or possibly had a soul (this is particularly important for some religious individuals). In the former cases, a person was alive and is now in a gray area, not completely gone while not completely here. With the acardius, it is not clear what might be gone and what might be here. The nonviable entity’s existence as both subjective and objective can make it difficult for some patient-mothers to consent to procedures because it is never clear what it is they might lose. The acardius challenges the strict subject/object dichotomy often present in reproductive analyses, showing that patient-parents and those who care for them may grieve the loss of objectified tissues because this physical entity may also be a subjectified dead baby. The acardius is ambiguous (c.f., rhetorical construction of mother-fetus as cyborg, Martin 1998). It is not clearly anything, but it is certainly something. Patient-mothers often show tremendous flexibility in defining and making the acardius. While they are able to move within their pregnancy narratives of subjectobject variations, their mental ability to redefine the acardius is also limited by their moral temperament, medical context, and legal ramifications. TTTS and acardiac twinning demonstrate the complex, emotionally wrenching decision making of patient-parents as they determine what fetoscopic procedures are appropriate. The remainder of this chapter explores the problematic treatment option of ligation (tying off or disconnecting the umbilical cord to an in utero entity) for these conditions. Even though ligation may offer the best chance for survival of one fetusbaby, many patient-parents found the option upsetting as they reconciled assumed behaviors of good parenting to wanted pregnancies with their situation. Patient-parents with TTTS pregnancies must determine when and if they are willing to ligate a once viable, yet now nonviable or dying fetus-baby from its co-twin. Patient-parents with acardiac twinning must determine if they are willing to ligate a never viable entity from the other fetus-baby. In both cases, patient-parents showed remarkable flexibility
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in resolving ambiguous situations and lingering emotions of remorse and hope. Twin Conditions Defined In tandem with increasing maternal age at conception and assisted reproductive techniques, twinning rates in the United States are increasing. According to the National Vital Statistics reports from the CDC between 1980 and 1997, The number and rate of twin and triplet and other higher order multiple births have climbed at an unprecedented pace over the last two decades. . . . the number of live births in twin deliveries rose 52 percent and the number of live births in triplet and other higher order multiple deliveries soared 404 percent. Singleton births, in contrast, rose 6 percent. (Martin and Park 1999:1)
Nonetheless, many Americans remain unfamiliar with the twinning process and crucial biological distinctions separating identical and fraternal twins. These differences have vast implications on the likelihood that a specific pregnancy will encounter problems amenable to fetoscopic treatment. To understand how twins develop, and how fetoscopy may be used to treat them, it is necessary to understand the similarities and differences separating identical and fraternal twinning. Fraternal twins are the outcome of two eggs fertilized by two sperm. Because fraternal twins are the result of two eggs and two sperm, they are best compared to any other sibling relationship (though some may argue that the shared time in utero and sharing birthdays, graduations, and so on as they grow older together creates a unique bond)—biologically speaking, they are simply siblings. Fraternal twins may not look alike and may be different sexes. A personal example illustrates the point. I have a fraternal twin brother. To look at us, you might know that we are related, but the similarities stop there: I stand a little over five foot tall, with light brown hair and green eyes; my brother, on the other hand, is six foot tall, has dark brown hair, and blue eyes. Although most people think we both resemble our father, few are willing to believe we are twins. The narrative of twins as a mirror image is a powerful cultural construct, and challenged daily by fraternal twins who appear very different from each other.
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Rarer than fraternal twins, identical twins result from a single fertilized egg splitting into two entities. Unusual in their development and sharing of blood though one placenta, identical twins are prone to prenatal conditions that do not affect fraternal twinning. TTTS is a condition affecting approximately 6000 fetuses per year, of which experts estimate 4000 will die. Although the condition is not fully understood, many physicians believe it is a result of abnormal and uneven placental bloodflow between the developing fetuses (e.g., Ville and Deprest 2002). With identical twin gestations, twins may share some blood through the placenta; however, the rate at which each sends or receives blood from the other is nearly even. In TTTS, abnormal placental vessels and arteries lead to uneven blood sharing. With disproportionate bloodflow, one twin grows anemic while the other bloats with excess blood. The fetus receiving excess blood urinates at a higher frequency, leading to increased amniotic fluid in its womb (assuming they are in separate sacs). The anemic fetus urinates less, leading to decreased amniotic fluid. Left untreated, TTTS can lead to preterm labor following early rupture of the amniotic membranes and, in some cases, the imposition of TTTS on developing fetuses is so severe that even without preterm labor at least one twin may still die. If one dies in utero it may further harm its surviving twin by bleeding into it through the shared placenta. If this occurs, the surviving fetus stands a higher chance of suffering neurological impairment or death. Fetoscopy is used to treat TTTS in two ways. First, and ideally, the fetoscope is partnered with a tiny laser that directly cauterizes the linking arteries and vessels in the placenta. With laser surgery, physicians disrupt the bloodflow between the fetuses and separate their circulations (for extensive medical descriptions on the merits of laser surgery to treat TTTS, see e.g., Quintero et al. 1998; Ville et al. 1997). Following laser surgery, the fetuses continue to develop with their own portions of the placenta. Minimizing the blood shared between the fetuses makes it less likely they will continue harming each other as they develop. In the event that one dies in utero, the likelihood of it bleeding into the surviving fetus is also minimized, thereby decreasing the risks of neurological impairment. Barring complications or neurological damage, the two
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fetuses survive gestation and are delivered vaginally as two healthy babies. In severe cases of TTTS laser surgery is not the best medical option, and patient-parents must decide if ligation—tying off the umbilical cord separating the dying fetus from the shared placenta—is a reasonable approach. To ligate an umbilical cord, physicians use fetoscopy and miniaturized surgical equipment, such as scissors and forceps, to identify the shared placenta and umbilical cord leading to the dying fetus. Once the umbilical cord is identified, physicians tie it off or otherwise separate it from the shared placenta. The fetus no longer receives nutrients and dies in utero, leaving the placenta and bloodflow to its surviving, viable twin. By avoiding spontaneous, uncontrolled death, surgeons minimize the detrimental effects of one twin’s death on the other (i.e., increased rate of neurological impairment and death). Barring complications, the single fetus continues to develop, and both the surviving fetus and its dead co-twin are carried to or near term when they are delivered vaginally. With ligation, the success rate for one live baby grows considerably. A second condition found in multiple gestations and amenable to fetoscopic intervention is acardiac twinning. Rarer than TTTS, acardiac twinning affects approximately 1 in 35,000 pregnancies, when the zygote forming identical twins splits relatively late in gestation. With late separation, one twin generally develops “normal” physiological characteristics (viable fetus-baby) while the other twin does not (nonviable acardius). As noted earlier, the acardius has a rudimentary heart (at best) and often lacks a head and arms; intriguingly, the bloodflow within the entity circulates backwards. All of these characteristics (and others) make the acardius incompatible with life. Also, the acardius may threaten the existence of the other twin when it bloats with excess blood, causing anemia and a stressed heart in the co-twin. Patient-mothers carrying these pregnancies must decide if they are willing to ligate the umbilical cord leading to the malformed acardius in an effort to assist the developing fetus. Like TTTS, the in utero entities share blood disproportionately, leading to the harm of both when the viable twin’s heart may ultimately expend itself acting as a pump for two. Left untreated, approximately 50 to 75% of these pregnancies end in the loss of the
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viable co-twin. With fetoscopic ligation, success rates for a live birth increase to 70 to 80%.2 Ligating the Subjective: The Case of TTTS Patient-parents facing ligation for TTTS can be separated into two groups: those who consent to ligation and those who do not. For some patient-parents, the option to ligate a dying fetus-baby to potentially save its twin, though deemed acceptable by the Catholic doctrine of double effect and by hospital policy, was absolutely inappropriate for the family and under no circumstance would they consent to the procedure. Although these patient-parents would consent to separating bloodflow between their fetuses by performing laser surgery on the placenta, they would not be linked to the immediate death of one fetus for the good of the other. Remembering back to an earlier case, one nurse recalled: “They told [the mom the risks], and the mom was like, ‘I won’t do it. I won’t tie this child off’ and the . . . [sick] twin did die. It finally went to nothing and it did die. And they did nothing. But they ended up with one healthy child.” In other cases, patient-parents did consent to ligation of the sicker fetus-baby in an effort to increase the odds of its twin’s survival. When determining if they would or would not consent to ligation, patient-parents were the moral fulcrums around which their relationships, feelings, and responsibilities for one twin was often positioned against the other. Although the prospect of ligation for TTTS was sorrowful for patientparents, some did choose this procedure, arguing that it was the best option available for their situation. While patient-parents were saddened by facing such a choice, most who consented to ligation were at least thankful for the option to do something medically and hoped for a bright future for themselves and their single, surviving fetus-baby. I met Abby Nates, a patient-mother in her mid-30s, during my stay at the hospital. Abby and her husband, Brett, opted to ligate for their severe case of TTTS. While I sat at her bedside, she summarized the feelings of many other patient-parents: I’m just thankful that we had the procedure. . . . I can’t believe that there are people who miss out on this opportunity . . . that’s exactly what it was, an oppor-
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tunity for us, to try to save one baby, or to try to save two—but that just didn’t happen. But without this procedure, then there’s nothing. There’s no hope and that’s what people have is no hope, that don’t know about this. So, I would do it again.
While the Nates and many others were appreciative to have the option to intervene, like other patient-parents they still grappled with the philosophical and emotional ambiguities surrounding the role of ligation in a wanted pregnancy. Among the issues facing patient-parents determining whether or not to consent to ligation for TTTS is the fear of choosing one fetus-baby over another. In one case, the patient-parents found a unique way to reenvision the pregnancy: the dying daughter gave up her life so that her sister could live. Emily and Peter Redding made a long journey to come to Holy Names. Emily was 33 and Peter had recently turned 40. I remember their great desire to save both daughters and the sadness that crept over them in realizing one was dying and she could not be helped. As I came to know the Reddings, I also came to know their in utero daughters, Kelly and Becky. During their interview, I cried with them as they told me their story. They explained the surgery as one in which one baby acted for the overall betterment of the two. The dying daughter, Kelly, was too sick to live and by dying in a controlled environment, she was assuring her sister the best chance of survival. The envisioned bond between the twins became a vehicle through which the grief-stricken parents could make difficult decisions congruent with the twinness of the pregnancy. The tearful mother explained that it was the selflessness of her dying twin, Kelly, that allowed her sister, Becky, to survive. Kelly and Becky’s mom said that “[by not ligating] we were still putting Becky in danger . . . there was still the danger that she could die . . . [so] it didn’t have much to do with saving Kelly. . . . She didn’t have a high chance of surviving . . . [and] the odds of putting Becky in danger—[Kelly], having to give up her life, has given Becky life.” The lost one was recast as the savior of the other. The culpability involved in hastening or bringing about a death is envisioned as the heroism of the unborn. The cultural narrative of heroism is a comfort to the patient-parents who are able to create a strong relationship with their surviving daughter, and an equally if not stronger relationship with their other daughter, the hero. In any
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event, the social interaction envisioned between the daughters entrenches a strong bond between their daughters and reiterates the strength of the twinning or relationship that the patient-parents constructed between their fetus-babies. Unfortunately, only time will tell how entrenching the twinness and heroism of her dead sister may affect the surviving sister, Becky. Although envisioning a relationship bonding their twins together may help some patient-parents to consent to ligation, it also may obfuscate the individualism of some twins. Particularly in cases in which a surviving fetus-baby appears like the lost fetus-baby or the patient-parents believe identical twins share a unique spiritual, emotional, or otherwise invisible bond, the survivor might live a life for two—never fully an individual but one life merged into a hybrid existence. In fact, some patientparents change the names of twins in an effort to define their identities. Naming conventions offer rare and important glimpses into how patientparents view their fetus-babies in relationship with each other, and this in turn affects how parents view their potential to be in relationship with the dead or surviving “twins.” In one case, on the death of one twin, the patient-parents did not feel it was right to keep the names selected for their twins since they were not taking twins home. Margaret O’Brien explained that she had determined names for her babies suffering from TTTS. Unfortunately, one twin became very ill and ligation was carried out to save the other twin. Following the birth of the dead fetus-baby and its surviving twin, the mother decided not to use the twin names and instead found a new name for the single survivor. She explained, “I felt like when I lost the one I pretty much deep-sixed both the names, I mean they were names that were together names. And . . . [they] weren’t going to be together anymore. So I just went a different direction. And sort of like a special direction.” Although some parents still saw a dead twin and a live twin as “together,” for this mother, the fact that one died implied a separation that she felt was not reflected in the names she had previously reserved for twins. In the opposite direction, the Reddings found naming conventions a useful way to keep a dead twin and her living sister together. As in the previous case, the twins already had names in utero. Following ligation
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of one twin, however, the patient-parents were not certain what to do with the survivor’s name. Recognizing that they had lost her sister, they opted to change the survivor’s name to incorporate her dead sister’s name. In this way, the survivor took on the name of the ligated twin (as her middle name), thus becoming a living memorial to her dead sister. In still another case, naming conventions showed how ongoing relationships between the dead and living members of the family were continually recast. When both twins died in a severe case of TTTS, their names reemerged years later when their mother gave birth to a single healthy daughter. Deciding on a name for their newborn, Veronica Adams and her husband opted to name their newborn after her twin sisters who had died years before. Although some people in her community thought this was an odd way to hold on to her dead babies, Veronica argued that naming her next child after them did not imply her baby was a replacement child but was a gesture in memory of the sisters she had never known. She explained, “when you stop and think about why people name someone after someone else it’s in memory and in love for that person. So that’s why we chose to name her after her sisters— not that we’re trying to replace them, but because we want to remember them and we love them so much, and it’s in honor of them.” Veronica’s interview was tear-filled and heartfelt. As noted earlier, she desperately misses her twins; with her newborn she was able to find a link to her twins, and perhaps in the future her new baby will come to know how much her parents love both her and her older sisters. Only time will tell. In cases of a single loss in a twin gestation, the dead fetus-baby might play an ongoing role in the developing parent-child relationship of its surviving co-twin. Hinting at issues of an innate twinness or fetalbonding, the dead fetus-baby although gone may still affect the development of the family it leaves behind (on surviving twin loss as an adult twin, i.e., nonperinatal loss, see, e.g., Case 1993). In particular, patientmothers who consent to ligation may wonder if they altered a twinness or bond between their fetus-babies. These patient-mothers and their supporters may have particular difficulty coming to terms with their potential role in the death and its effects on the survivor.
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Returning to Carole and Craig Daniels, a couple who had to write their own referral letter for fetoscopy, their fetus-babies were diagnosed with an acute case of TTTS. In an effort to save one of the fetus-babies, the Daniels consented to ligation of the sicker one. Although saddened to make such a decision, they were confident in the rationality of their decision. I was intrigued by how well they appeared to accept the situation and asked how they thought they might deal with the issue in the future. I asked if they thought they would tell the surviving twin about the surgery. Carole immediately indicated that they would, saying, “Probably but maybe not until they’re [sic] like 19 or 20, not when they’re 5 [sic].” Craig agreed but also added a caveat: maybe when they’re [sic] older—unless maybe we can see that there’s potential psychological problems with the child, maybe that is part of this. Because I do, I believe that they have in utero experiences that you may not be able to pinpoint [until] they get older. But yeah, I think at some point. . . .
Carole and Craig were both scientists, and although they used a highly rational, scientistic decision-making approach they recognized that they could not anticipate all the physiological and psychological effects of their decision on the unborn. What was particularly intriguing about their response was that, although one fetus was ligated, they referred to the survivor as “they” (Craig used both the singular “child” and plural “they”). Also shocking was that I did not realize the unusual word choice until I reviewed the interview tape. Although arguments are made that the survivor should always be considered a twin, the Daniels’ use of “they” implies an ongoing aging of both. Whether the use of “they” was a rhetorical slip or suggestive of a future growth relationship is unclear. What is clear is that even in circumstances in which patient-parents consented to ligation, the cultural context of twinning often proved a complicating factor within patient-parent narratives and explanations of the event, and in due course, of the ability of patient-parents to make sense of their pregnancy experiences. Worries of psychosocial trauma between twins when one is ligated are not only in the minds of patient-mothers currently undergoing procedures, such as the Daniels, but may be an issue for parents who had a procedure years before. Margaret O’Brien, a mother who underwent ligation for TTTS to save one of her failing daughters, believes that her
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surviving daughter has unusual characteristics; she sees these oddities as evidence that the surgery interrupted an innate twinness in her development. I interviewed Margaret in 1999, but her memory of the surgery years prior was still clear. Margaret pointed out that her daughter seems uncomfortable alone, and more than other children seems to crave companionship, particularly from her. Margaret said: You know she’s had some problems adjusting socially, I guess. She’s been real shy—and she’s, she’s just now starting to come out of her shell. She’s a mother’s girl. I mean she, I, I, tell you, she knows. She knows what we went through. She may not know, you know what I mean, intellectually—and remember—but I feel like she has put me in place of the twin loss. Where she just, was almost inseparable with me for years. . . .
She continued to reflect on her daughter, You know, you just worry about her. . . . after the whole ordeal I had some discussions with people about like twin loss and the syndromes that the other twin feels, because they say there’s quite a connection between the two and just knowing that she was in the uterus, in the womb, with her sister that was dead— I mean you have to think about it in those terms, for you know six weeks—it’s kind of like—weird. And I just wonder, if, if, she’ll ever—I mean she’ll know— she knows that she’s a twin. I mean she doesn’t understand it now, but it’s on her birth certificate and we’ve got pictures and stuff like that—ultrasound pictures. . . . You know you just wonder what they think and what they see. You know you see twin programs and how the twins are so together—and like, “I’m so glad I have my twin sister—she’s my best friend, and you know, we do everything together.” Twins are almost inseparable. So, I think that part of her personality is just grief from a loss and she doesn’t even know it.
Margaret’s observations lead her to question the aftermath of her surgery. In these cases, it is important to ask, How much of what a mother sees in her surviving twin is selective? Has she created a selffulfilling prophecy, in which her fears of having disrupted a bonding experience makes her look for signs of it, or is she seeing clear evidence that something invisible, yet real, was altered?3 Although patient-parents may fear unintentionally harming their fetusbabies by undergoing fetoscopy for TTTS the in utero entities generally are seen and grieved as potential persons or, at the very least, as fetusbabies with varying levels of subjective identities. These characteristics may lead patient-parents to grieve the situation and lost fetus-baby, but they are able to define the situation with relative ease. Funeral homes
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and state laws are prepared for such demise, and there are cultural norms for dealing with the tragic loss, even if speaking of it remains difficult (e.g., Layne 2003). The loss of a once viable fetus-baby, complete with all its appendages and internal organs, represents a very real loss—a wanted child that might have been. Ligating the Subjective/Objective: The Case of Acardiac Twinning Patient-parents with acardiacs also were interested in the relationships existing between their in utero entities; however, unlike patient-parents with TTTS, they had to determine the subjectivity and objectivity of that which they ligated. The ability of the acardius to exist as both subjective fetus-baby and objective “biological tissue” often confused patient-parents, leading to angst and other forms of discomfort. Unlike TTTS, in which both in utero entities were thought of as ill or dying subjects, acardiac cases involved one entity that was seen as an ill or dying subject (the viable fetus-baby) while the other was pictured as both an ill or dying subject AND a mass of biological tissue or object (nonviable acardius). Again, the acardius is always an ambiguous loss (Boss 1999). While conducting my interviews, I found that a patient-mother may speak of her pregnancy and in utero entity at different points in ways that were both subjective and objective. The identity of the acardius was flexible. Acardiac patient-parents showed similar concerns to those with TTTS, who feared losing a wanted baby and being implicated in its death; however, unlike TTTS losses in which patient-parents mourn a potential baby or person, in acardiac cases both the patient-mother and her social network may be confused not only about what happened, but to whom or what it occurred. Although the nonviable condition of the acardius may have helped patient-parents to consent to ligation, its ambiguous philosophical and emotional meanings make these conditions and procedures particularly traumatic. In 1999 I interviewed 26-year-old Janice Tippens, a woman who had consented to ligation of her acardiac pregnancy in 1997. She explained that she and her husband were not quite sure what it was they lost. Even though the ligation occurred over two and a half years before our
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interview, she still had trouble explaining what she carried and how she felt about her decision: I mean I guess the reason why we have such a hard time is because we electively decided to disconnect it and basically kill it. I mean, I don’t know. I don’t know. It’s just, I guess since the way Dr. Martinez always explained it to us was that he had, you know, interviews and stuff after he did several of the procedures and the media would come in and . . . [ask], “Well how could you, how could you kill this baby? You killed one for the other.” He would always explain it, “Well, this other one wasn’t going to live, anyways.” I mean this baby had no head, no heart, no you know—nothing. You know, I guess I just took from what, how, you know, Dr. Martinez explained it and I guess that’s where I sort of made my opinion or my . . . [mind] up—was that it was just really a tissue that was forming, and not really a human being, per se, I guess, I don’t know. . . .
Although she presents the doctor’s and the reporters’ views as certain, Janice does not share their convictions. She draws from both sets of concerns, hopes, and explanations while struggling within the tensions noted earlier: the acardius as simultaneous would-be baby and biological tissue. Like the painful circumstance of TTTS, the confusion that surrounds the social status of these high-risk pregnancies led some to wonder how they should act and feel as “mothers” willingly killing their “babies.” Janice further explained that it was her decision and fault that the “baby” died, even though it could not survive on its own. Reflecting on her ligation, she said, “I just decided THEN, you know . . . I had disconnected that umbilical cord and everything . . . I had killed it, you know, essentially, even though it would never live . . .” (her emphasis on “then”). In these cases, patient-parents must not only come to grips with what an acardius means to them, but deal with any guilt or confusion that follows. Being a mother implies that one is a mother to someone, yet for mothers of acardiacs, it is less clear to what or whom they are related and what this relationship might mean as they reconcile their medical decisions and procedures with their larger life-course and personal histories. The potentially juxtaposed views between a mother and her social network made these feelings all the more tenuous. The liminality of the acardius makes Western “motherhood” problematic and illuminates cultural assumptions within social organizations (e.g., autopsy laboratories) and professional networks (e.g., medical terminology). Legal systems, mortuary regulations, and hospital policies may not be equipped to
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handle such flexibility in dealing with an entity that is not fully human, not fully nonhuman; not fully anything, but lost.4 Amy Edwards, a woman with an acardiac pregnancy, had trouble reconciling her perceptions of her pregnancy in light of others’ views. Amy explained that, following the delivery of her acardiac pregnancy in 1996, she agreed to send her “baby” for an autopsy. What followed was traumatic and not only highlights her differing views from the autopsy laboratory but also illustrates the flexibility of her own understanding of what the entity was and what her relationship with it entailed: I was home about a week from the hospital, oh maybe a week and a half from the hospital, still very emotional about everything, and had gotten a letter in the mail from . . . [the lab] saying, “Please sign this so that we can discard of the specimen.” And they wanted to just throw it away. And, I was just nuts. I said, “I am not letting them throw my baby away!” And you know [they] are going to throw it in the garbage or incinerate it, or whatever, and so I called the pathologist . . . and . . . [asked], “Do I have a right to get this back?” You know, “Can I ask for it back?” And he said, “Sure.” And so I had to send a letter and within a week they mailed me—back to the hospital, actually—they mailed it, in a little box and it was all taped up and we took it to a local funeral home here and they make little tiny—it looks like a little egg carton casket, and um with little blankets in it, and . . . um we named him . . . just kind of through everything we’ve gone through and . . . [we] buried him on my husband’s great grandparents plot—next to them. And so now we do have a place that we, you know, can go to and we can explain to our kids—you know the 4 year old and . . . [the acardius’s twin] is going to be 3 . . . so we can explain to them that they did have another brother and what happened.
Amy’s relationship with her acardius/son was constantly metamorphosizing, in and out of subjectivity and objectivity, human and nonhuman. At one point he was a son, at another it was a mass. This vacillation, and by extension the apparent inability to know the entity as one particular identity, leads to confusion between mothers’ changing emotions and inflexible policies. Laboratory policy defines the acardius as a specimen requiring proper disposal. Amy’s family, however, wanted their family member back; proper disposal for the laboratory was not proper disposal for them. Amy described the difficult decision to contact the autopsy laboratory and ask for her son’s body to be returned to her: Amy: . . . being in the situation we were, I didn’t know if that was something odd to ask, either. You know, because . . . we had heard that,
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you know . . . [it’s] at 5 months that they say that it’s actually considered a living child—you know, as far as funeral services and stuff. . . . if you’re 5 months along and you lost the baby then people had to have funerals but if it was anything less than that they just considered it a miscarriage. DB: Okay. Amy: And so, you know, knowing that the baby wasn’t going to be viable on its own because it didn’t have a head and it didn’t have a heart, we didn’t know if that was something weird to ask. You know, but that’s—in our heart that’s how we felt. That we wanted that baby—we didn’t want it to be thrown away. Amy’s experience illuminates the insufficiency of fetal age as a marker for appropriate disposal practices of an acardius and highlights the importance of considering the social relationships surrounding the pregnancy experience. If her “fetus” had “lived” five months (in utero) and then died, by law they would have to bury or cremate him. Although Amy gave birth well past the five-month marker, she faced two definitional quagmires. Without a head or heart, it is possible that her acardius was never alive. Also, following ligation at around 22 weeks, the acardius did not receive the nutrients necessary for further in utero development and arguably may have died at this moment. Following the birth of a ligated acardius a patient-mother must decide if her acardius was ever alive, if it died, and if so, when and how. For patient-parents who struggle to follow hospital policies and state law, it may fall to the sympathetic medical providers (especially those within departments of social services and the chaplaincy) to assist in identifying the gestational age at which the fetus-baby or acardius died and making the appropriate decisions for disposal of the lost entity (c.f., Kovit 1978). Although Amy decided to ask for “him” back, she was uncertain if her request was reasonable and if she would be judged for her decisions, feelings, and actions. The inability of laboratory policies to allow for the acardius as both a deceased son and inanimate tissue was particularly troubling for Amy, who felt that she needed to justify her feelings and relationships with the acardius within a larger social and political context. Although she consented to ligation to save her viable fetus-baby, the lasting unresolved issues surrounding its humanness and potential personhood or subjectivity continued to be problematic.
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When the acardius is seen as a nonsubjective object, patient-parents grapple with losses that take away the potential baby’s personhood and humanness, which some mothers have already constructed for their in utero entity. Whether and how a person sees her acardius as more subject or object may relate to her previous understanding of what relationship she anticipated having with the in utero entity. Unlike mothers with TTTS, who might imagine the birth of two healthy babies, mothers with acardiac twins are unable to imagine such an outcome.5 In the summer of 1995, Sarah Wainwrite consented to the ligation of her acardiac twin. When both twins were delivered, she did not choose to hold or see her acardius. In fact, she remains uncertain what happened to it. Sarah’s statement shows her objectifying and subjectifying the acardius; however, she also stresses the importance of anticipation and knowing what she expected from her pregnancy: Sarah: . . . I just think all along that we knew he was deceased and that was even before . . . [the ligation]—not that we didn’t have names, but you know, I don’t know, I think about that now and it’s like, well we had the one and we . . . [knew] he was alive and the other one really was never even [alive]—I mean yeah, he was, he just was never formed right. So I don’t know maybe that’s where in my mind, I never really questioned it further? DB: Um hum. Sarah: In my mind it was only just one baby the whole time because just the other one was just kind of written off and besides when I went in—it was like—you know, I didn’t even know I was having twins until the sonogram that day, so it was—you know, I was going in to see one baby in my mind anyway, maybe that influenced me? I don’t know—it’s second guessing, I guess. It is particularly interesting to hear Sarah’s narrative and its power: she anticipated and worked to protect one baby. The fluidity with which patient-parents create relationships with their in utero entities is apparent in their reactions to ending the potential development of something or someone for the good of the other. Like patient-parents struggling to come to terms with TTTS and ligation, patient-parents with acardiacs also enter a double-bind in which
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“saving” a “baby” may entail consenting to the “death” of the “other.” In this light, a parental relationship with one may challenge the patientparent’s relationship with the other. If she does not choose to ligate, she may be “responsible” for not saving a potentially viable fetus, but if she consents, she may be “responsible” for “killing” the acardius. Ironically in the case of an acardius, because the subjectivity of what or whom is killed changes, feelings of parental culpability may be strong while a social network acknowledging the loss may be weak (c.f. Layne 2003). Perhaps the most obvious limitations on a patient-mother’s ability to think of the acardius as subject or object, human or nonhuman, are in her discussions with her family and medical providers. In these discussions, patient-mothers both determine their own relationships with the in utero entities and create or alter relationships with those in their social network. In the cases described here, physicians, laboratories, and previous experiences were co-constructive forces in defining the acardius as more or less subject or object. It is clear that not everybody in a patient-mother’s social network may be as flexible as she when constructing relationships with and beliefs about the acardius. Individuals including physicians, ultrasound operators, and clergy form opinions that both clash with and support a woman’s view of her pregnancy. To illustrate, Mary-Beth Brown underwent ligation for her acardiac twin. She explained that a painful part of her experience was how her community, notably her minister, a close family friend, reacted to her decision to ligate her acardius: “I did have mixed results in my community, which has left me with some hard feelings toward some people. Still. And I don’t know that I’ll ever get past that. In particular, my minister.” She continued, [He] had been a very close personal friend . . . was very opposed to the surgery. He felt like it was an abortion. That I was selecting one child over another to keep, and when I explained all the medical details, which I understood, read about it. You know, I said, “One has no vital organs. It would never be able to live. It’s not a baby. . . . and it’s killing the good one. And if I don’t do something, the good one’s heart is just going to give out . . . or it’s going to be born with such heart problems that we’ll either have a long-term care child or it will just live a little while. This is our only chance to save one baby.” He was very against it, and you know, after I had the surgery, he didn’t come to visit.
Mary-Beth’s decision not only accounted for her current life circumstance, but likewise incorporated her family’s medical and social history.
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Her decision required thoughtful deliberation. The loss of her minister so affected Mary-Beth and her husband that they now monitor closely what they are willing to tell those closest to them. I was touched that she was willing to speak with me. When speaking with a patient-mother carrying an acardiac pregnancy, two things become apparent that separate these extreme cases from TTTS: at any point she may switch from thinking of the acardius as a subject to an object, and the person speaking with her may think of the acardius in a way that does not reflect the patient-mother’s feelings at that point. It is important to recognize that, as a reflexive researcher I also co-constructed acardiac and TTTS pregnancies through my interviews. At times it was challenging to “keep up” with a patient-mother’s story while simultaneously anticipating where it might head. Nowhere in my conversations with patient-mothers carrying acardiacs was my ability to unintentionally contradict a patient-mother’s experience more clear than during my 1999 interview with Lucy Dover. During the interview, it seemed clear to me that Lucy had two daughters and one was acardiac. I asked her to tell me about her decisions following the birth: DB: . . . did you have a funeral or a cremation? What happened after . . . [your dead daughter] came out? Lucy: [Nothing] because it wasn’t even formed. It was just a mass of tissue. DB: Okay. Lucy: Actually, really nothing. Because it was at that point I didn’t— it was just like, I can’t even explain it. Just a mass. It wasn’t a form of anything. You know what I mean? I didn’t really have a finality there. DB: Okay. Lucy: It was—no, I didn’t. I felt horrible following this exchange. Had I invoked humanness, personhood, or parenthood in a way that was antithetical to her experience? I continued to listen to her, regretting that I misunderstood how she thought of her acardius and worried that in my attempts to support her subjectification of the acardius I hurt her by suggesting that she tied
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off or killed her baby. When I reviewed the interview tape, however, I found that just before this interaction she had spoken of her “mass of tissue” as a “daughter” and “sister.” Lucy explained that on her surviving daughter’s birthday she decided to tell her about the pregnancy and her lost sister. She explained, “I didn’t tell her the whole story of what happened. In time, when she’s older, I’ll tell her . . . I don’t remember [what I said but] . . . that she had a sister that looked just like her, a twin sister.” It was at this point that I realized my attempt to support her by referring to the acardius as a subject was not incorrect, but it was ill timed. We were both working through and constructing our own understandings, experiences, and narratives. I had not misunderstood her as much as invoked the wrong reading at the wrong time. To further illustrate Lucy’s changing views during her pregnancy, she and her sonographer developed an important, personal relationship. At one appointment Lucy said she felt sad for the “baby” that she had ligated and asked the sonographer if she thought that it was acceptable to have these feelings. According to Lucy, the sonographer replied, “You lost a baby. You’re grieving for that baby and that’s perfectly normal.” The compassionate sonographer supported Lucy’s feelings and assured her that her grief was reasonable. Later in the pregnancy, Lucy returned for another ultrasound. Immediately following the examination, she went to the restroom (in the hospital) and “delivered” her acardius. She said, “I went to the bathroom [and] Baby A came out . . . of course I got hysterical—not actually hysterical—but very upset. . . .” I asked her to explain in more detail. She replied: I didn’t know exactly what was happening, but then when . . . [the sonographer] came in, she looked and she said, “That’s Baby A.” It’s like, oh, I didn’t want this, because I didn’t want to deal with that part. I didn’t want—because it was just a mass of tissue, so . . . she pulled it out. She had to put it in a jar. Took it down to the lab and everything.
When the acardius “came out,” the sonographer put it in a specimen jar rather than wrap it in a blanket, an action that would have occurred if it had been a baby, dead or alive. It is important to ask, though perhaps impossible to know, how the specimen jar may have affected Lucy’s ability to think of the acardius as “baby” and how this in turn affected the relationship she created with the surviving twin. Lucy’s recollection
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of her interactions with the sonographer illuminate and suggest that Lucy’s flexibility is seen in others. Just as Lucy moves between her relationships with the acardius as baby and as tissue, so too does the sonographer, who at one point tells Lucy that she lost a baby and at another places it in a specimen jar. While the object may be the same physical structure, the subject is a different reading and necessarily suggests different relationships.6 Like Lucy, Amy Edwards, the mother who had difficulties reclaiming her son following his autopsy, also confronted a troubling material environment when giving birth. After her ligation, she returned to her hometown and was delivered by a local physician.7 Whereas in Lucy’s case a compassionate sonographer objectified her acardius, Amy’s also compassionate physician and attending nurses subjectified her acardius. Amy explained the birth: Amy: . . . we thought there’s no way . . . [our physician is] going to deliver . . . [this pregnancy]—because we knew we had to deliver both of them— DB: Um hum She continued to reflect on the experience: Amy: And so, it was kind of—not funny—but when . . . [the living baby] was delivering his head came out and the other baby shot over the doctor’s shoulder, across the floor. And just kind of squirted out. And um, my physician had the nurses clean off the other baby and then bring it to my husband and ask if we wanted to see him. And see how, you know, what it looked like, and whatever. I remember asking my husband, “Do I want to?” DB: Uh huh. Amy: “Do I want to have that memory in my mind forever?” But we got to see him and he was like I said, perfectly healthy from—you know—it didn’t have arms, but from the trunk down, it had toes, it had a penis because it was an identical boy. Like Lucy, Amy had a distressing physical introduction to the acardius and it is important to recognize the differences in their contexts. In Amy’s situation the acardius “shot out” and landed on the floor. Instead of calling for a specimen jar, the physician requested that the “baby” be
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cleaned and brought to the parents. Also important is that the physician asked Amy and her husband if they wanted to see and hold the acardius. Unlike Lucy, whose circumstances dictated that she had to see her acardius (in a restroom) Amy and her husband were able to decide what kinds of contact they wanted with their acardius.8 As demonstrated before, patient-parents and their social networks (notably their medical providers) demonstrate remarkable flexibility as they move between these multiple understandings when speaking about, and interacting with, the acardius. Early in my time at the hospital I observed my first ligation of an acardiac pregnancy. It was an emotionally confusing and traumatic experience for me. As the case drew to a close, the medical workers watched the ultrasound to make certain the acardius was no longer receiving blood. During this time, we stood in the darkened room and watched the black and white sonogram while listening to the sounds of anesthesia and fetal blood flow. At one point as we waited, someone pointed out that the surviving twin appeared to be sucking its thumb. Another person explained that was reasonable because “he just lost his brother.” I stood still, uncertain what had occurred and to whom. Comparing Ligation of TTTS and Acardiac Twinning TTTS and acardiac twinning are different physiological experiences, but both involve twins and as such produce a number of cultural complexities for patient-parents who must decide on an appropriate treatment option for their fetus-babies. The viability and potential personhood or subjectivity of developing fetuses with TTTS that had all their body parts led patient-parents to make difficult decisions about what they would and would not consent to with fetoscopy. How they saw the developing relationship between themselves and individual fetus-babies, as well as between the fetus-babies, directly impacted how they experienced and understood fetoscopy. Similarly, patient-parents with acardiac pregnancies had to face the question of what they had created and carried. Like patient-parents with TTTS, these patient-parents must determine what their relationships and responsibilities are with each in utero entity, and in turn grapple with how the entities may or may not relate to each other. Based on their assumptions about who or what is developing, they
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must decide an appropriate course of action. However, unlike TTTS fetus-babies, which were generally seen as potential persons and certainly human, acardiacs appear to be both fetus-babies or potential persons and specimens lacking subjectivity. The assumptions surrounding twinning are rich and varied. Of the many cultural narratives is the belief that twins share a bond. Like maternal-fetal bonding, twin-to-twin bonding assumes that aspects of a fetus’ psychosocial development occur in utero. Some patient-parents found the cultural belief that such a twinness or bond existed to be a problematic aspect to their decision making and how they interacted with their fetus-babies. Although many were uncertain as to what this bond was, the concern that it might exist made decision making particularly different: how could they alter part of the pregnancy if they had no way of knowing what other attributes of development might be harmed in the process? How they envisioned these relationships directly affected their willingness to consent to particular forms of fetoscopy. TTTS is a compelling condition in that women carry two otherwise “normal” fetuses that are, nonetheless, sick and potentially dying. Although patient-parents may not see their in utero entities as people or complete babies, they often considered them fetuses with the potential to become babies. This potentiality to become a baby or appearance as something that could become a baby was powerful. Killing or disconnecting a potential fetus-baby with TTTS was traumatic, but patientparents nonetheless could imagine what it was they had lost. Acardiacs, however, were not all subjectified, in many circumstances objectified or thought of as having no human potential, let alone personhood potential. Patient-parents with acardiacs were often less certain what it was they had done and to whom or what. Women carrying lost acardiacs were less clear if their grief was normal or acceptable. It is somewhat problematic to know what these ill or nonviable entities are, in what ways they are valued, and to what extent patient-parents feel a relationship or responsibility toward them. Two factors work against patient-mothers struggling to define and understand their acardiac pregnancies: first, they must negotiate the tenuous and murky boundaries separating subject and object, human and nonhuman; and second, they must reconcile feelings of confusion sur-
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rounding the flexible identity of an acardius with the immediacy of fetoscopy decision making and procedural consent. Simply put, it is difficult for patient-parents to determine their responsibility to, and relationship with, an entity if they are unable to define or determine what the entity is in the first place. The acardius exists as ambiguous loss, proving a challenge for patient-parents who face surgical consent and attempt to determine its impact on the family. There is no one way to look at an acardiac pregnancy; each pregnancy is unique, and patient-parent decisions reflect the complexity of their situations. At the same time, general themes emerge when analyzing how patient-parents, their families, and medical workers think about the acardius in relation to the pregnancy. How an acardius is interpreted not only reflects the assumed relationships already in existence, but importantly, affects the relationships to come. It is socioculturally intriguing that even without a head, heart, or arms, the acardius may still have a name, personality, and position within the family. Although these readings imply quite different statuses or attributes for the acardius, they are not mutually exclusive, and most women moved between these varying identities. Through multiple readings of the acardius, patient-mothers and their families were able to create or “read” some forms of certainty in highly uncertain sociomedical encounters. It is important not to read the flexibility a patient-mother’s narrative expresses as only confusion and an inability to “really know” what is happening. Instead, it is possible to read these narratives as creative repositioning and re-envisioning of their relationships with the acardius.9 In this light, patient-parents are active co-constructors of their pregnancy experiences. The fluidity of movement between the acardius as subject and object, while ontologically challenging, may also help patient-parents construct narratives around their decisions to consent to ligation: it may make “more sense” to ligate an object and to grieve a subject.10 Objectivity and Subjectivity and Their Roles in the Future Assumptions of appropriate and inappropriate fetal development lay the groundwork for consenting to fetoscopy procedures, and in the process
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create the context in which fetoscopy is seen as both a miracle procedure to save dying fetus-babies and a misguided technology terminating or creating sick or disabled fetus-babies. How in utero identities and relationships are defined and experienced by patient-parents and those who care for them directly affects the willingness of individuals to consent to fetoscopy. Within a context of uncertainty, it is important to ask “what” is being “made.”11 In medical encounters, the assumption is that a baby or babies are made. Within parental encounters, it is also clear that corpses and grief are made as well. Particularly challenging to patientparents with “twins” is negotiating the tensions between two in utero entities. Within these contexts parents of wanted pregnancies may wish to protect their wanted “unborn children.” While listening to patientmothers coming to terms with their pregnancies and treatment options, it becomes clear that they are both “moral pioneers,” (Rapp 1990) determining what is and is not an appropriate use of fetoscopy (e.g., ligation), and also epistemological or “meaning-making” pioneers as they determine what is occurring in their pregnancies and to whom. The dilemma many face is that saving one may necessitate ending the “other.” Patientparents who consent to ligation experience a particular tentative pregnancy (c.f., Rothman 1986; also see, e.g., Blizzard 2000; Taylor 1998). In some ways, the pregnancy remains the same: the surviving twin continues to develop; in other ways, the pregnancy and hope that it may signify is lost. Thus, parents who undergo ligation to be parents or to act as parents (i.e., to take a baby home) are at the same time acting in ways that are generally considered antithetical to historically situated wanted parenthood in Western cultures. Nevertheless, with both TTTS and acardiac twinning, it is clear that women do value their developing entities, and in many cases ascribe their in uteros with subjective characteristics. All patient-parents wished for the best possible outcome for their procedures and pregnancies, but they differed on what the best outcome was and determining the appropriateness of methods to attain it. Of the concerns offered, many were based on worries over the potential humanness or personhood of their in uteros and their potential culpability in ending the development of these entities. Although medical reasoning may make ligation a clear-cut advantage in some cases of TTTS, some
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patient-parents could not consent to it largely because of the potential viability of both fetus-babies and their potential culpability in ending a wanted pregnancy. Like TTTS, patient-parents with acardiac pregnancies had to determine whom or what they carried within their pregnancies, and based on these decisions, had to determine what treatment option was best. Although issues of viability may appear to make acardiac decision making simpler compared to TTTS, in fact acardiac decision making may prove even more perplexing. Patient-parents with acardiacs had to define what comprised their pregnancies at the same time they were determining what procedures were and were not acceptable. Because acardiacs often showed both human and nonhuman aspects, patient-parents’ experiences in determining what they could and would do and how they would react to it were more varied. Nonetheless, while somewhat freeing to patient-parents making difficult decisions, acardius flexibility also implies an ontological ambiguity with which some struggled. Regardless of consent or procedure, the relationships developing between patient-parents and individual fetus-babies reflected assumptions about how the pregnancy would or could end alongside their hopes for its survival. The surviving co-twin, while wanted and loved, is also a reminder of the dashed hope and painful decisions its parents made. As the cases of TTTS and acardiac twining show, patient-parents vary in how they envision their pregnancies. Patient-parents also vary in how they ultimately determine the losses and successes they experience with fetoscopic surgery. These themes are important and demonstrate how patient-parents ultimately make sense of their surgeries. These issues are examined in the following chapter.
7 Loss and Success: Social Networks and Constructing an Outcome
As demonstrated throughout this book, one of the most painful human experiences is to lose a wanted pregnancy. Women and their families lose a potential child and their dreams of parenthood (e.g., Blizzard 2005; Layne 2003). Fetoscopy is always offered and undertaken in a context of loss. In some cases, loss implies the death of a wanted fetus-baby; in others it is the loss of the “perfect baby” and realization that an ill, disabled, or malformed fetus-baby exists (e.g., Landsman 1998, 1999). In still other cases, a loss might be experienced as a loss of faith in one’s body, a religion, or a cultural narrative. Especially in Western contexts, loss often invites feelings of maternal guilt and failure. Although fetoscopy procedures are framed by multiple kinds of loss, including the death of a fetus-baby, it does not follow that patient-parents consider their pregnancies and fetoscopy procedures unsuccessful. Although no patient-parent wanted a loss, many found ways to incorporate losses into their lives. In fact, some were able to envision their pregnancy experiences in such a way that the end result was more acceptable and in line with their desired pregnancy outcome. Loss cannot and should not be separated from the fetoscopy experience. Throughout their pregnancies, patient-mothers come to terms with their hopes to avoid loss and the realization that multiple kinds of loss can occur at any point during a pregnancy. In her work on pregnancy loss, anthropologist Linda Layne refers to a prenatal loss as a “wouldbe” baby to highlight the not attained or missing wanted physical baby and potential person in the lives of its waiting parents. When the baby does not survive gestation, the would-be or would-have-been parents grieve the would-be baby (e.g., Layne 2003). Families that anticipated
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new members, and may have spoken of future personalities and relationships, must now come to terms with the fact that a living baby will not arrive and, if possible, find a way to incorporate a dead baby or child-imagined into their family history and reconcile its passing with their dreams and hopes for its survival (e.g., Côté-Arsenault 2003). In some cases, parents honored and recognized the loss of a wanted baby by planting living remembrances such as trees and shrubs in the baby’s memory. Caring for living symbols representing dead children may help grieving parents feel connected to or in relationship with their lost children. Veronica Adams, a mother who lost her twins to TTTS, explained that tending to the cemetery where her twin daughters are buried helps sustain her ongoing relationship with them. Referring to the cemetery, Veronica said, “I feel like I want to put a park bench there and just move in . . . to take care of the gravesite and to visit the gravesite is the only way that I can be a mother to them.” Veronica’s ability to be a parent does not end with the death of her daughters but is recast through other nurturing activities. Some fetoscopy patient-parents would certainly consider themselves “would-be” or “would-have-been” parents grieving their lost, would-be babies. These parents experience a loss that does not go away; the longing for completion remains (c.f. Davis-Floyd 1992).1 Although living babies may fail to arrive, many of these families still manage to create relationships with their dead babies (e.g., Layne 1992). The baby does not grow into the child imagined, but he or she continues to be part of the family. More than a would-have-been mother, many fetoscopy patientmothers appear to be “already-mothers” (even if this is their first pregnancy) who underwent surgical intervention in their efforts to give their ill or dying baby medical attention. Some patient-parents undergo procedures in an effort to be “good parents” and help their “children.” To illustrate, during an interview one couple offered the analogy that if their older daughter needed surgery, they would do whatever they could to get her proper treatment; the same was true for their unborn children. The patient-mother became a patient because she was a mother. Yet, as noted in the previous chapter, even though patients saw themselves as mothers, they may not have also seen their fetus-babies as complete or
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full persons, or as having rights. Nonetheless, in some cases patientparents had strong mental images of their baby’s identity. The process of undergoing fetoscopy not only reified this belief but further engrained an imagined child in the mind of the parent. In essence, the “child in mind” was more developed and healthy than the fetus-baby in utero (c.f. Sandelowski 1993). Many patient-mothers underwent fetoscopy in an effort to make the fetus-baby more like the child in mind. Unfortunately, when losses occur, patient-mothers must find a way to make sense of their experiences and incorporate the loss into their life. Without engrained ways of dealing with such difficult loss, many are left grieving in silence when friends, family, and medical providers fail to be supportive or acknowledge the painful event (e.g., Layne 1992; Ney et al. 1994; Layne 2003). Fetoscopy is not only a clinical procedure, but also a medical research project. Medical practitioners are bound to research ethics, which include extensive informed consents that list the risks and probabilities of losing the pregnancy with and without treatment. From the first discussion of fetoscopy, to double-checking medical consents and answering last-minute questions in the preoperative area, the possibility of losing the pregnancy either during or directly after surgery, is discussed by patient-parents, their companions, and medical providers. The prospect of losing the pregnancy is not hidden in research protocols, nor are the risks of maternal morbidity and, in extreme situations, maternal mortality from surgery. The dire reality of these situations, while troubling to patient-parents who no doubt wish their situation were better, also forces the prospect of loss to the fore. Physicians, nurses, chaplains, and social workers discuss the potential for loss with patient-mothers before it happens. Discussing these sad possibilities beforehand may help patient-parents who later lose pregnancies by making the event less unanticipated.2 Nevertheless, without standardized policies for dealing with the multiple kinds of loss experienced with in utero demise or cultural narratives to explain the event in the context of Western parenthood, some patient-parents still find it particularly difficult to deal with losses. Most critiques of pregnancy loss investigate the loss of a singleton pregnancy; however, most fetoscopy losses occur with twins or other multiples. Although the insights gleaned from singleton investigations are
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no doubt helpful, fetoscopy experiences involving patient-parent choices form a different context that may not be reflected in the more general analyses of pregnancy loss of one developing fetus-baby. As examined in the previous chapter, losing an identical twin is particularly problematic. Not only must patient-parents wonder about the effects of potential bonding between the fetus-babies, but the surviving child serves as a constant reminder of his or her lost twin. Although the immediate loss passes (i.e., a mother leaves the hospital after losing part of her pregnancy), parents and others live with an ongoing “calendar of grief” with markers for the “failed anniversaries” and “celebrations that never got to happen” (Rapp 1999:242). The trauma of living with these failed anniversaries may be heightened and ongoing when a dead baby leaves behind a surviving identical twin whose birthday, age, and physical appearance might have mirrored the lost baby, thus offering parents a painful reminder of the child that might have been. In her work examining the death of a twin, pediatrician and founder of the Multiple Births Foundation in the UK, Elizabeth Bryan writes: Parents who lose both their twins suffer a plain, and conspicuous, tragedy. Yet they will also receive the unqualified sympathy of relatives, friends and the medical profession. The position of parents who lose one twin is not nearly so simple. There are some aspects of the bereavement, both for the parents and for the surviving twin, which are special, particularly where one twin is stillborn or has died within the first few days. (Bryan 1995: 187–188)
Bryan’s observation that single twin losses may be particularly difficult is well taken. As noted earlier and throughout this chapter, the survivor is a constant reminder of what might have been. But, it is also important to ask what might constitute “unqualified sympathy” in the U.S. context. In her work exploring pregnancy loss in the U.S., Layne argues that speaking of miscarriage (and pregnancy loss) is a cultural taboo (Layne 2003). How sympathy (and grief) are expressed within the family and by others in their social network is important to examine, as these activities help create the parental narrative of loss. Layne investigates spontaneous loss. Much of her sample thus includes early loss. Many fetoscopy losses occur later in pregnancy, potentially further along in the social process of making (baby)personhood identities. However, it is shortsighted to emphasize too much the differentiat-
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ing periods of gestation and their effects on parental loss. In her work on pregnancy loss, a bereaved mother turned international speaker and author, Sherokee Ilse writes: “Typically, people will make an assumption that the length of the pregnancy relates to the amount of grief you will feel. Therefore the belief follows: a 9 month pregnancy loss is worse then a 3 month pregnancy loss which is worse than a 2 week pregnancy loss. You cannot measure the amount of attachment and love by the size of the body or the length you have known someone” (Ilse 1996:7). With the public familiarity of fetal images and a fetal presence, it may be possible to “know” elements of a would-be baby long before he or she is conceived. Again, the child in mind is a powerful influence on waiting parents, who must incorporate any anticipated and unanticipated loss into their lives. Medical and anthropological studies show that an important part of grieving a pregnancy loss involves accepting the reality of the situation (e.g., Layne 1992; Ney et al. 1994). To assist in making the event real, some researchers recommend that grieving mothers hold their dead babies and be allowed the time and space to say goodbye. Even though holding a dead baby may seem odd or even morbid to some, talking about the loss and holding the baby may help mothers and caregivers alike make sense of the traumatic event and recognize the reality of the loss. Medical studies support this activity further, arguing that a perinatal loss has detrimental affects on a woman’s health in general (for critiques on overall effects of loss on women’s health, see, e.g., Janssen et al. 1996; Ney et al. 1994). While many hypotheses have been offered to explain this, what the research makes clear is that many grieving mothers may find both psychological comfort and physiological improvement from holding their babies. Physiological improvement notwithstanding, by acknowledging the loss and recognizing its tangible existence, those most affected by the event can begin to come to terms with it and anticipate and prepare for its ongoing effects. Many mothers who lost their fetus-babies mentioned the importance of spending time with their dead babies and, in some cases, keeping the babies’ things as keepsakes (on attributes of “reminders” following pregnancy loss, see e.g., Layne 2003; Layne 2000). Desire to be with their dead children may be particularly strong because the relatively short
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period after birth and before burial, cremation, or disposal of the body is the only time in which parents can see, hold, and talk to their children in person. The intimate time shared by a grieving mother and her dead baby was particularly valuable to some mothers who would never again be able to see their babies. During our 1999 interview, a then 36-yearold Tina May reflected back on her 1994 surgery, after which she lost her daughter to a rare disorder. She explained why it was important for her to hold the baby: Tina: It’s funny, but we do, even when you lose a child, you need to mother that child for a little while before you can let go. At least I felt that way. DB: . . . When you say “mother,” is that holding the baby or what? Tina: Holding, talking to, singing to. You know, you’ve got so many dreams for your child when you find out you’re pregnant that you feel that you have to, at least, get a little of that out. And I felt like I at least needed to hold her, tell her how much I loved her, how hard I had tried, how proud I was that she had tried so hard, because that’s one of the things Dr. Martinez said the next morning after the surgery. He said, “I can’t believe it.” He said, “This baby is really struggling to try to live.” He said, “This baby was already struggling to”—he said that he could see that—when they’re in the uterus, they practice breathing the amniotic fluid in and out of the lungs, and she was already, the next morning, trying to do some of that, which would have been a struggle to do. So I felt like she was trying as best she could. We all have that fight for life in us. DB: Sure. Tina: And I felt like I just needed to talk to her and tell her that I was proud of her and the role she had played in our lives, and just feel like I was her mommy for a little while. So that it would make it easier to let go. Although Tina found comfort in holding her baby and in hearing Martinez’s words, it is imperative not to romanticize the experience and ask, how might Martinez’s words have added to Tina’s grief or how might they have comforted her? Medical staff may have good intentions when they speak of unborn babies and allude to personalities, but this remains
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a political decision (and, importantly, one that they may not recognize). Unfortunately, unlike pregnancies ending with the birth of a live child, in cases of pregnancy loss the baby does not cry or cling to its mother’s finger. Instead it remains lifeless, slowly turning from warm to cold. Not all mothers decided to hold their babies, and not all meetings between mothers and their babies were like holding a live baby or one that was newly deceased (e.g., one whose skin pigmentation is like that of a living child and whose body temperature is warm). In some cases following fetoscopy procedures, babies were born in such poor condition that, by the time the parents were able to see or hold them, their bodies had already began to deteriorate. It is important to bear in mind that, unlike stillbirth, fetoscopy ligation of twin pregnancies ideally results in a nondeveloping fetus-baby remaining in utero for months before birth. Although leaving the dead twin in utero does not appear to medically harm the developing twin, the dead entity does begin to deteriorate. In fact, one mother was told by her physicians that she should not look at her dead daughter because the baby was in such bad shape (the baby had been dead for 11 weeks in utero while her twin sister continued to develop). Another mother’s son was in such poor condition the day after delivery that fluids ran out of his nose. In these cases, the potential meetings between parents and their babies were hardly comforting and quite traumatic. Seeing a baby in bad shape may limit or affect the ability of the parent to envision the baby in any way other than sick or, worse, inhuman. Although the loss of an eagerly awaited baby is particularly traumatic for the woman who carried it, it is often felt by others who, whether or not they knew of the fetoscopy procedure or supported its use, must come to grips with the fact that the potential babies will not arrive as expected. In the earlier cited case of Tina May, building a family and caring for it also entailed incorporating the loss of her anticipated baby into her family unit. When I asked Tina how she explained the death to her young children she said: [My son] understood that the baby was sick. And that we were going to see the doctor to see if the doctor could help make the baby better. And what I told him afterwards is that the baby didn’t get better, that she died and went to heaven. And he seemed to understand and accept that. I mean, at age 3 . . . I don’t think
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they understand the concept of permanence of death and the death of a child he had never seen . . . I don’t think, it’s going to make a really big impression. He was aware that his baby sister had died and gone to heaven, but he still prayed every day: “Please God, give me a baby brother.” To him, it was—I’m not sure exactly—he has mentioned it more in later years, and so has my daughter. She has asked me several times, in fact, it’s funny. There’s no way at her age. She was . . . about 15 months old. I don’t think there’s any way that she really could remember a whole lot about what went on at that time, but she does know what happened and she’ll tell me all the time. She’ll say, “Mommy, you have five babies. Four here and one in heaven, right?” [I reply] “That’s right, sweetheart.” And so she just kind of—she brings it up every once in awhile and talks about her sister who’s in heaven.
Although her children lost a sibling, they believe that she exists in heaven, a world apart from them, but still there.3 Unfortunately, there may be physical limitations to such hopeful imaginings. Layne’s work shows that sometimes women are able to rethink their dead babies into more hopeful states (Layne 1992).4 As illustrated previously, some grieving parents look at the would-be baby as a now-existing angel. This angel, unlike the sick and dead baby, is in a more “perfect” state. Recontextualizing a dead baby may be particularly difficult when it is not “normal,” even for a lost baby. Acardiac twins that/who may lack hearts, heads, and other appendages and organs may present a particularly difficult situation for parents who might wish to construct their would-be child as a normal baby that was just too sick to live. In these cases narratives of heaven and angelic forms may prove comforting if it already exists within the parents’ religious contexts. When fetus-babies die, their surviving family members not only have to reconcile a place within their family unit for the passing, but also must secure a physical, final resting place for the fetus-baby.5 In many cases, dead babies have relationships with living family members and a place with dead family members (e.g., Layne 1992; on religion and family, e.g., God as Father, see Layne 1999a). The dead baby acts as a link between the dead and living family members while at the same time reflecting the lost relationship in heaven that it would have had on earth. In this vein, some in utero entities were kept within the family by securing their place alongside dead family members, spiritually and physically. Dead family members played two key roles in securing dead babies a place within the family: first, they were seen as people (or spirits or souls) who would
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lovingly tend to the emotional needs of the dead baby; and second, they often signified a safe or protective physical location where dead babies could be laid to rest. In some cases, although the dead baby is part of the family left behind, it also joins a new angelic family comprised of other dead family members. This assures the baby of love, nurturing, and protection by those who are still remembered, loved, and known by the family on earth. Dead family members became surrogate or stand-in parents until the day that all will be reunited. In 1998, Abby and Brett Nates, a professional couple in their mid-30s, selected to ligate a dying fetus-baby to protect its twin. Both believed that Abby’s deceased mother would look after their newly deceased baby: Abby: You know, I’ve told you that my Mom died, and I guess I feel like, that you know, she’ll take care of this baby, that this baby’s with her . . . Brett: Spoiling her. Abby: Spoiling her. And that comforts me. She loved kids. She was so excited about [me being pregnant]. She did not know I was pregnant before she died but that’s what she would tell all her nurses, is that she was waiting on me to have a grandchild before she died. And so she didn’t make that, but now she’ll have one of her own. . . . While Abby grieved for her lost baby, she found some comfort in knowing her child was with someone close, a loved one who would take care of her baby.6 Not only did the creation of other world relationships help affirm a dead baby’s place in the family structure, but some mothers found comfort in physically placing their dead baby alongside other dead family members. Like Amy Edwards, who buried her ligated acardiac son on her husband’s great-grandparents burial plot, Veronica Adams also explained that it was particularly important that they bury their dead twins with family. She did not want to leave her babies alone. Her husband made the arrangements to have them buried alongside his father.7 Veronica explained: He thought [it] would be comforting to know that they were in the ground—in you know, in their resting place with someone and he was afraid since we don’t
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know where we’re going to be 30 years from now, and we may not be here at all, he thought it would be nice if they were with someone.
Also important to Veronica was that she surround her dead babies with certain objects, such as toys and photos of the family: Veronica: We . . . also did put pictures in their casket of each family member. DB: Of each family member? Veronica: Uh huh. DB: Meaning yourself and your husband and . . . [kids]? Veronica: Uh huh yeah. . . . And that’s all I remember. I don’t think that we did grandparents, um not that I remember—we probably didn’t have the pictures available for one thing, but— DB: Can I ask why? Veronica: Why the pictures? DB: Yeah. Veronica: I don’t know, it just seemed like the thing to do— DB: I haven’t heard of that . . . Veronica: They were . . . just kind of actually tucked in like the edges of the casket—you know, kind of around them. Whether family met babies in heaven or were buried alongside them, dead extended family did play a prominent role in some fetoscopy experiences (e.g., when twins die and are cremated or buried together, parents may believe that they are with family). Unlike TTTS, in which both fetuses were at one point viable, it is less clear that malformed in utero entities such as acardiacs exist as family members. When patient-parents lost acardiacs, they faced a number of tenuous, boundary-making (and inducing) questions regarding the ontological status of the entity as well as its potential position within a family (c.f., Kovit 1978; Morgan 1996). Janice Tippens explained that she lost her viable son following ligation for an acardiac twin. She buried her dead, once viable son, and they also buried the acardius with her son. Although the acardius is buried, she still struggles with what it was, and how to deal with its demise: “[Our son] was buried in the Catholic grave-
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yard, . . . and has a little stone and everything. That was a difficult thing. Very difficult. . . .” She continued, The thoughts of you know—what happened and you just wonder what he would have been like. We named him . . . we didn’t name the other baby. People, I don’t know, the other baby was buried, but for some reason, I had—was blocking that whole other tissue—or whatever—out of my head. I mean—I delivered it and they asked me if I wanted to see it, and I didn’t want to see that baby—or whatever—I have a hard time calling it a baby—but I mean I don’t know if that’s wrong or not, but . . . So that baby was buried too, with . . . [our son] just in the same little teeny, tiny, casket.
Janice knew that she wanted to bury her son but was unable to decide what the other entity was, let alone its potential place within the family. Although Janice is unclear as to her relationship with the uncertain entity, by placing it within her son’s coffin, she appears to be more certain of its relationship with her son. Although some Western parents bury placentas, few would place tumors, masses, or other biological tissues in the coffins of their dead children. Janice’s decision to include both entities in one coffin highlights the ambiguity of the acardius as a fetus-baby and the flexibility of a family’s experience of perinatal loss. In the preceding cases, family or kinship was based on bilinial Western notions of a nuclear and extended family; this is not the only way to identify kinship. Rayna Rapp found that some parents who have children with Down syndrome imagine their children as part of a family that has similar physical and mental characteristics. Rapp writes: “The attribution of alien kinship does more than separate Down syndrome children from their genitors and genitrexes; it also provides an alternative kin group into which they can be placed. . . .” She later continues, “Inventing counterdiscourses through medicine and kinship helps some parents to make meaning out of difference. This capacity to imagine a positive resolution to the existential dilemmas posed by misfortune is exercised by many parents of youngsters with hereditary disabilities” (Rapp 1999:277). Such positioning may be particularly helpful with the loss of an ill or malformed fetus-baby. In interviews of mothers who lost babies perinatally, some mentioned using hospital services that allowed their babies to be cremated with the “other” perinatal losses.8 In these cases, an individual identity may be lost to group identity and a place with family may entail “resting” with others of similar appearance or experience.
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Although the “choice” of where and how to cremate, bury, or dispose of a wanted, yet lost baby is important for many parents, some parents are unable to “dispose” of their children in the manner desired. At least one mother consented to having her dead son cremated and buried en masse because she could not afford an individual burial. After losing her son following an amniopatch, Jenny Galto, a low-income patient-mother, felt she had no choice but to donate her son to the hospital. She explained: Jenny: We didn’t have the money to bury him . . . we were low income at the time, and went to social services and they gave us a terrible time. DB: Really? Jenny: They gave us all these—the case workers said it would take at least 2 to 3 weeks before they even made a decision of whether they would pay for a cremation. It was just terrible. We . . . talked to some burial places . . . but we just didn’t have the money. Even for the cremation we couldn’t come up with it. So we had to donate Timothy to the hospital to whatever—you know what I mean—for the doctors—the ones that are learning to be doctors? DB: Um hum. Jenny: Then a year later they sent us a notice that Timothy had been cremated and they were having a funeral service with all the other babies that were with him. . . . we went there for the funeral service. So he’s buried in . . . [a distant town]. I guess they cremate all the babies together that were donated to the science department. That was awful. That was the terrible part to it. We couldn’t bring him home to bury him. But . . . DB: So did you meet other parents at . . . [the service]? Jenny: Yeah, it wasn’t a good day. DB: Yeah. Jenny: Everybody else was in the same situation financially—they couldn’t take their babies home to bury them and so they had no choice but to donate them to the science department. DB: Oh I’m so sorry to hear that. Jenny: It was tough because it’s like going through it twice. But there were a lot of parents feeling the same way. There was at least, I’d say at
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least 30, 30 couples and these babies were all cremated and put in a little urn together. At least he’s not alone. Western pregnancy loss occurs within capitalistic markets and legal mandates for appropriate disposal practices. The ability to dispose of a fetusbaby or other product of conception involves both cultural and financial factors. Seeing the Loss: Follow-Up Ultrasounds and Fetoscopic Baby Pictures Fetal images and their subsequent imaginings may create particular tensions for women who choose to ligate one fetus while continuing to gestate the co-twin. As noted previously, wanting and waiting parents and siblings, visiting the unborn through sonograms, create places within the family through stories, hopes, and future goals for the fetus-baby. Through fetal imaging techniques, patient-parents and their social networks slowly come to see their fetus-babies as “real” when they see humanlike aspects of their fetus-baby’s development. As the fetus-baby becomes real to the patient-parents, they may, and frequently do, give it characteristics associated with personhood. In this vein, anthropologist Janelle Taylor argues that ultrasound creates a “prenatal paradox,” encouraging bonding and reassurance while it helps women make decisions regarding the outcomes of their pregnancies (Taylor 1998). Taylor’s insights can be applied to fetoscopy analyses and expanded to examine the ongoing tensions that patient-parents face following a ligation or in utero death of one fetus while the co-twin continues to develop. To illustrate, Stephanie Bacon, a patient-mother of twin sons suffering from TTTS, explained that using ultrasounds throughout the beginning stages of her pregnancy made her feel she knew her sons. As the pregnancy continued, one appeared to grow lethargic while its twin looked far more active. She saw both at each ultrasound, but the active one took on a special role in helping Stephanie create identities for her sick in utero sons. Referring to the more active one, Stephanie said he was the attention getter or “show off” who would perform for his family and act out on the ultrasound. Stephanie’s family members also noticed the difference and were enamored by the rambunctious son who was not
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yet born. Stephanie reflected on her feelings toward the active one and felt bad that he may have kept her from bonding with her other son and, more to the point, that her overbonding with him may have heightened her grief when she ultimately consented to his ligation to save his brother. Stephanie explained her trauma from the different relationships she had with her sons: “What’s hard is I feel as a mom, I bonded more with [the active one] because [the other was] just this relaxed individual that’s sitting back and not doing much. . . . It almost is like . . . [the active one] already had a personality.” Knowing the personality of one and being less familiar with the other may have caused more grief in her decision to ligate the formerly active son, but at the same time it may help her to work through her grief because she felt that, at some level, she already knew her son (c.f., Layne 1999b). Grief and bonding aside, in Stephanie’s case it was clear that, although she had twins, she also had individual fetus-babies with which she bonded separately. Any decision to ligate one for the good of the other implicitly required her to weigh the two relationships against each other. In surgery it was difficult to watch umbilical cord ligation when I knew how much a patient-mother wanted her fetus-babies to survive. While watching surgery, I was often filled with grief for a mother who made the decision to try to save some part of a very troubled pregnancy. Perhaps even more difficult were the few times that I attended an ultrasound examination the following day and watched patient-mothers and their companions accept the reality that a fetus-baby was in fact dead. In these circumstances, the ultrasound integrates contradictory feelings for patient-parents: hope for one fetus-baby and grief for the other. This is particularly difficult as some have noted that the process of grieving may be different for those suffering “natural” perinatal loss and those who “choose” to terminate (Ney et al. 1994). Although most patientmothers would not compare their decisions or procedures to abortion (nor would the hospital administration), the larger context of choosing to lose a fetus-baby as potentially equitable to abortion complicates the matter. Peter and Emily Redding, who ligated one twin to save her sister, Becky, had particular trouble viewing the follow-up ultrasound. The day following surgery, I accompanied them as they went for a follow-up
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ultrasound to see if everything was all right. Although the nonligated fetus-baby was still alive, the grieving couple found the sonogram traumatic and painful to watch. Following the sonogram they returned to their hospital room where we spoke about their experience with fetoscopy. The issue of the sonogram arose. Peter explained: “I’m going to have a real hard time with this next couple of months because of the fact [that] I have this image in my head of two floating around, so I don’t know where it’s going to go from there, but it’s just—I just gotta keep my mind off—the, you know, the negatives of it, and just [think of the] positives of it.” Later in the interview, Peter and Emily returned to the difficulties of reconciling past fetal images of two live fetus-babies with current images of one living and one dead: Emily: That was one of the [difficult] things today, the sonogram . . . after four or five of those things . . . [undergoing procedures that last] for hours, you know you’re not seeing the same things as the techs and the doctors, but you know what you’re looking at, and you can see and identify, and— Peter: You weren’t even looking— Emily: Huh? Peter: [Today] she placed the wand down in that area [where you could see the babies] and you started getting glassy eyed. You knew where she was. Emily: Oh, I know. I know where she was looking. Peter: . . . well you may not have been looking with your eyes—but your mind is [there, thinking about the loss even if not seeing it]. Emily: Well, but, I also know what we’ve done and I know what [her] state is, and her situation. Um, but you have a visual in your head and right now I want to keep that visual . . . [right now] I’m not quite prepared to see her without a heart[beat]. It’s just part of the whole process. Emily was not prepared to face the ultrasound to see her dead fetus-baby. At the same time, this decision kept her from seeing or visiting her living fetus-baby. Emily’s need to separate herself from the reality of her loss impinged on her ability to view her sonogram and see her surviving daughter, an activity that many parents not experiencing a troubled pregnancy find enjoyable and that some also believe helps the woman bond
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with her unborn (for criticisms of “bonding” as a natural part of pregnancy, see, e.g., Taylor 1998). Returning to Wayne and Stephanie Bacon, they too were concerned about seeing their fetus-babies after ligation. Unlike Emily, however, Stephanie did look at the ultrasound and found it less traumatic than anticipated, but acknowledged that she might have a tough time with future exams: Wayne: We sat and looked at the sonogram today—and Stephanie had said prior to the surgery that . . . [she was] not going to look at the sonograms anymore—it would be too tough to take a look at an unborn fetus and the fetus that is not going to be born . . . Stephanie: And today I did see. . . . I saw baby A’s head. That was hard. A lot less hard than I thought it was going to be. Wayne: It’s, it’s still— Stephanie: But maybe it’s because I think I’m blocking it right now?— I don’t know. The reassurance offered by ultrasound follow-ups has a painful, ironic twist, reassuring patient-parents that one fetus-baby is alive while confirming that another wanted fetus-baby is dead (Blizzard 2000). As the preceding cases show, the decision to consent to surgery and undergo the procedure may be emotionally traumatic, but the postsurgery experiences such as follow-up ultrasounds and explaining to others why only one baby will survive a twin gestation and another will not may prove even more difficult and emotionally challenging. When patient-mothers consented to ligation of a dying twin in an effort to save the in utero co-twin, some feared resentment from their living children and were particularly concerned that older siblings might blame them for causing the death of their little brother or sister (c.f., Mitchell 1994). When I interviewed Wayne and Stephanie Bacon after the ligation of their dying fetus-baby to save the co-twin, it was clear they were particularly worried about how their older son might react to hearing that one of his eagerly anticipated brothers was now dead. Wayne and Stephanie explained their concerns: Wayne: Another issue is we have . . . [a son] at home that doesn’t know anything about this and has somewhat bonded with—
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Stephanie: Both of them. Wayne: Both of them. Stephanie: He has been to sonograms and has seen both of them. Wayne: And has gotten excited. Stephanie: And especially Baby A. He has seen Baby A wiggling around . . . he has named Baby A, a troublemaker—, or what else? Just because it’s bouncing all over the place. Wayne: Now with issues, with children and death—that’s going to be a big issue. Because I’ve read a lot and I’ve counseled with death and dying with that type of thing. We know that we’re going to have some repercussions. . . . He’s still talking about his great-uncle dying . . . [with whom he] was very close—that was . . . [a few] years ago— Stephanie: . . . [A few] years ago. Wayne: . . . We still have that—we now also have [this]— Stephanie: He actually goes into almost like a panic when it starts to bother him a lot. [. . .] Wayne: [We need a way to] really, really pinpoint or say, this is what and how you explain to your child what’s going to happen, or what has happened. That it’s not us that went in and destroyed a life, basically. And that’s what our big fear is—is that . . . [he] can conjure up in his mind, “mom and dad went away—they come back and they say—well, there’s not twins anymore” and how do you exactly counsel a child at that age that something, something happened? Often family members, including siblings, visit developing fetus-babies at sonograms and discuss imagined futures as they create identities for the unborn. In the process, each individual creates a different relationship with the in utero and the potential for conflict between family members supporting or rejecting fetoscopy and in utero treatment grows. Fetoscopic Success In light of the many losses that occur in fetoscopy experiences, it is important to consider what constitutes success. I use the term “success” loosely; indeed, patient-mothers preferred that all their fetus-babies survive and be healthy—in short, not to face fetoscopy and its potential
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losses. Success takes into account not only the final outcome of the surgery and pregnancy but also the feelings of those making the decision. Most intriguing were the cases in which patient-mothers considered their surgical outcome successful even though a wanted fetus-baby died.9 I do not wish to imply that all patient-mothers and their companions, regardless of outcome, consider their cases and decisions “successful.” Loss is complex, and success varies because individual expectations vary. Yet, even when living babies fail to arrive some parents are able to view their fetoscopy experiences positively, many noting that although they suffered a loss, they had tried to avoid or minimize it (Blizzard 2005). With the variety of potential losses surrounding fetoscopy experiences, some parents found certain kinds of loss more bearable than others. In the case of twin gestations, success is problematic; there are two entities, and success takes both into account. As Margaret O’Brien puts summarily, “You know you get into a situation where, do you want to lose both? Do you want to save one? It was just a very, you know, life altering decision.” As shown in the previous chapter, even when patientparents decided to save one fetus-baby, and importantly when they actually take a baby home, the surviving baby is a living reminder of the baby they lost (e.g., Sychowski 1998). Unfortunately, patient-parents who consent to fetoscopic intervention, including ligations and laser surgeries and other procedures still might end up with nothing. Stopping a fetal heartbeat as treatment for a wanted pregnancy is difficult for many patient-parents who desperately wished for unproblematic pregnancies and healthy babies. Margaret O’Brien was hoping to undergo laser surgery in an effort to separate her twins’ bloodflows. She had already been hospitalized for an extended period to monitor and treat her pregnancy, and was well invested in the hope of saving both; however, when she and Martinez discussed her situation, he suggested that she also consider ligation of the sicker fetus-baby. Margaret explained how difficult it was to consider ligation as a reasonable option: What they wanted to do . . . [was] try and . . . [laser] the communicating vessels in the placenta . . . but the other procedure that they wanted me to consent to, in the event that [it] was not successful was twin ligation, which would have
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been the actual ligating of the vessels to the sick baby. And ah, so that was um, you know that was a real big, huge decision because that would mean that the one baby would die. You know right at that point in time, or it would just suffocate. There would be no bloodflow or no nutrition to the baby at all. So it was quite the ordeal. And actually they had to go before an ethics committee, I believe even through the hospital before they would even allow Martinez to go ahead with anything like that. And it was a pretty big decision for us. At that point we probably had been in the hospital—I had been in the hospital, oh a good 6 weeks trying to correct the situation. . . .
Margaret was reflective as she explained that she had grown attached to the idea of her twins surviving: It was a very emotional time for me. It was very difficult. You know? I was probably 20 weeks when they did the procedure, and had basically been feeling movement and watching both fetuses by high-tech ultrasound for weeks, and had a hard time with the decision and had a hard time grasping just the reality that even if I didn’t do it—the one baby had been through so much. . . .
For those who choose ligation for TTTS, it is not only the tying off of an umbilical cord that is problematic and painful, from the patientmother’s perspective, but that a technical success implies that a once beating, though stressed and failing, fetal heart has now ceased to beat. Adding to the complexities, a stressed and failing heart of one fetus-baby might give out, and if it does, might cause further harm (including death) to the co-twin. Patient-parents become clock and fetal monitor watchers trying to determine the points at which they might intervene. Abby and Brett Nates explained that, although they wanted both fetusbabies to survive, they recognized that their fetus-babies were ill, and that the death of the sick one might compromise its co-twin. Like many of the patient-parents who underwent ligation, Abby and Brett were both happy and saddened to have the opportunity to intervene and possibly save one baby: Abby: I just think if we can have one, then that’s just a blessing. [I ask her husband.] Brett: Ditto. Yeah, I mean exactly. I don’t feel any differently than that. I mean, we’re happy to have the baby girl . . . Abby: We were excited about twins— Brett: A week ago, a week ago yesterday—
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Abby: We were having nothing. Brett: We were having nothing. While they lost one fetus-baby, they may have saved the other. Although patient-mothers and their companions may always grieve a lost fetusbaby, they may view the procedures and/or surviving child as a medical success or “blessing.” Although most saw the number of surviving babies as a reasonable way to define if a procedure was successful, others defined success by the health of the surviving baby or babies. In these cases, the babies were wanted, but patient-mothers and their companions were particularly concerned about the potential negative consequences of surgery on the survivors. Collette Stockton, the patient-mother who taped her fetoscopy “baby pictures” to her hospital room wall, worried that by trying to save her fetus-babies, she might unintentionally cause them further harm: My greatest concern was the babies supposedly were going to die either way, so if they died after the surgery—you know . . . this sounds terrible—we were no worse off than we were before. The other option was that they could be . . . healthy, which would be fantastic, or they could be handicapped or very premature and have lots of health problems. It was that gray area that was kind of scaring me, too. Because our [referring] doctors had really said to us, “Listen, if you do any intervention you may just drag them into being unhealthy.”
The Stocktons worried that unintentionally harming their unborn fetusbabies would lead to the birth of sick babies. Equally important is that their referring physician’s warnings of dragging them into being unhealthy may have exacerbated potential parental feelings of guilt about both doing something and doing nothing. For Deanna White, a woman carrying a fetus with a bladder obstruction, the prospect of her baby being born ill or living in pain was terrifying. Deanna explained: Deanna: [The surgery] didn’t bother me, I mean, because I didn’t have any other choice. DB: Okay. Deanna: It was either that or he would die, or even worse, be born and have horrible things wrong with him. I mean, I didn’t. There was a lot that went in to deciding to do it. I mean I was scared that if I didn’t do anything [and he] died I would never forgive myself. And I was scared
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that if I didn’t do it and he was born and lived in pain, or had a horrible short life or a horrible long life—I couldn’t bear to watch him hurt. So I didn’t know what to do, so finally, I said shoot, I’m just going to try everything . . . and maybe it will work. As the cases of Collette and Deanna exemplify, although their babies were wanted, there was a state they feared as possibly worse than death. Neither family wanted “ill” children and, perhaps more, neither patientmother wanted to be responsible for making her fetus-babies sicker. Colette’s and Deanna’s concern about the potential quality of life for their fetuses-babies is compelling yet problematic. Disability rights theorists and critics of the new genetics explore the social values inherent in deciding who is fit to live and who is not (for criticisms of disability as a condemned life, see e.g., Asch 1994; Blumberg 1994; Landsman 1999). Although fetoscopy may be criticized for its potential eugenic implications, it is important not to separate the eugenic undertones in these statements from the lived experience of maternal blame and failure for troubled pregnancies and sick babies. With Colette’s and Deanna’s explanations, it is less clear that they want “perfect babies” as much as they do not want to harm their fetus-babies (for criticisms of “prefect babies,” see e.g., Landsman 1998). Patient-mothers who use health as a final arbiter of success are in a double bind. As noted earlier, if they do nothing and continue to gestate fetus-babies into poor health, they may be blamed; likewise, if they choose to intervene and end up with sick babies, they may be blamed as well. Although feelings of maternal blame are not an excuse for eugenic judgements, it is not reasonable to consider one issue without addressing the implications of the other (c.f. Kaufmann 1988). In contrast to these mothers’ experiences, in 2005 Ramona Emerson was a 28-year-old mother living with two sons who survived TTTS only to be born with severe cerebral palsy. She did not want ligation and believed that God would determine the final outcome of her pregnancy and her sons’ health. Her outcome now keeps her at home and running back and forth to any number of physical therapy appointments for her sons. Some people cannot understand how she is able to cope with the situation. She explained:
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So many people, like my other friends who have, you know, normal developing children and family and friends, and everybody is like, “I don’t know how you do it.” I am like—it is not like I have a choice, for one thing. You just do it. I mean they are your children, and they were given to me, not to you, probably because you couldn’t handle it. That’s why they were given to me.
Although her sons are not “perfect” by the larger cultural narrative, they are hers, and she loves them deeply. She also continued to reflect on how important her church life is and how accepting her family is of their situation. For Ramona, although her sons are different from most children, they are also special in other ways: My boys have touched more lives than any of us will ever even know, and there are so many people in this state, in this, I mean, especially in [a big city] that don’t even know us but that have a love for the boys, because they have heard their story through this person or that person. We’ve had . . . a news story. We’ve been in the newspaper, you know, at our church. People in our church feel like they are theirs. They gave birth to them, they’re raising them.
Ramona’s sons and their family’s reactions to them, as well as their church’s reaction, make the definition of a perfect child problematic. Although Ramona’s house is filled with medical equipment, it is also filled with love and faith. A successful surgery gave life to her two special sons. Although the medical goal of fetoscopy is to save ill or dying fetusbabies, it is important to note that some patient-mothers who lost their pregnancies still found ways to think of their procedures as somewhat successful. Reflecting on her acardiac pregnancy and loss of both in utero entities, Sarah Wainwrite explained, “It worked out really well even though, like I said we didn’t have a good outcome [the birth of the viable one].” She explained that her referring physician, Dr. Martin sent her to a specialist, Dr. Sanchez: [We went to a hospital to have a better sonogram.] The doctor there was very negative. He was not I guess aware of some of the new procedures . . . made it sound like the best thing for us was to, you know, abort the baby—I don’t know the exact term for that, you know, lose the baby, or . . . . We were going to lose the baby with a very high percentage or that maybe something would be wrong . . . that’s what he made it sound like. It was pretty negative and we left there and it was very traumatic. We drove home and we talked about it and my husband and I we talked and he was leaning like, maybe we should just abort or what should we do? Should we get another opinion?
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A few days later, they met again with Dr. Martin, who had since learned about fetoscopy as a possible treatment. Further, Dr. Martin and Sarah attended the same church, helping Sarah to feel that they were on “the same side” and not feel “judged.” The relationship fostered between her and her physician formed the basis of a friendship and helped to contextualize her loss in a more positive light. She explained: [The doctor and I] kind of got close during this . . . we still talk about that too, this just like brought us all together—and it was a positive feeling even though it was sad and at the time, very traumatic for everyone.
Sarah continued: A lot of positive did come out of it, I guess. Just that everybody worked together—I think everybody was just so hoping that it would turn out good and positive and you know—so that I think eases my mind. I know that I got the best care that I could have at the time.
In cases where some success could be attained even though a baby was not brought home, or in Sarah’s words “a good outcome” was not achieved a common theme was that the parents felt they had tried: they gave their fetus-baby the best chance possible (Blizzard 2005). Like Sarah, Tina May is able to define her pregnancy ending somewhat positively: Well, then and now, I think I felt about the same. Anything that helps give these precious babies a better start, especially the ones that would not survive to be born, to me is a good thing, and a helpful thing. I’m glad it was there. I’m glad I got to use it. I’m glad that Dr. Martinez got to at least give me the opportunity to try. And as I said, I have no regrets because I feel like at least I tried. I did the best I could. Being a Christian, I don’t know where you stand on this, I’m very, very much pro life, not to the point where I think it’s okay to go blowing up clinics. I think those people are sick, but wherever possible, I think that life should be respected and preserved and since this helps do that, helps preserve, hopefully, the lives of these precious children, I think it’s wonderful.
Tina’s ability to see her experience as positive (even though her baby died) was based on her belief that she tried and, as she also noted, the experience gained by the physician would ultimately be used to help others. Also important is that her decision was based within her religious context. Although Tina grieves her lost baby, she also takes comfort knowing that others will gain from her procedure and that her decisions were made within what she feels is an ethical and moral context.
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The Future of Fetoscopy: Avoiding Loss and Creating Success Pregnancy loss is always a part of the context in which fetoscopy is delivered. In some cases, procedures were designed to produce fetal-baby loss; in others it was hoped loss would not occur. Even when patient-parents ended their pregnancies with their wished-for outcomes, the innocence of many perspectives of Western pregnancy expectations is lost (e.g., Layne 1992, 2003). Fetoscopy procedures occur within a cultural context in which pregnant women are often held responsible for the health (and death) of their fetuses. Maternal blame fuels many “choices” over whether or not to use reproductive technologies. In some cases, women attempt to minimize blame by pursuing high-tech interventions; yet with fetoscopy (specifically ligation), the intervention itself may invite further accusations of blame. Fetoscopy stands at the boundary of increasing and decreasing potential maternal blame for pregnancy loss. At the same time, maternal blame is fashioned partly through fetoscopic images and closely related ultrasounds. As noted earlier, although this value-laden fetal imagery is potentially reaffirming and comforting to an individual patient-mother, it is always politicizing. “Individual” patientparent decisions and experiences are part of a social context in which success varies. Because of these variations, it is important that medical workers not state a “goal” for the pregnancy and surgery. In fact, the only “goal” may be that the surgical procedure help patient-mothers to construct a pregnancy (versus “make a baby”) that helps them attain their shifting goals. Pregnancy loss affects not only the individual patient-mother but her social network, which may anticipate a new member. Particularly in twin loss, patient-mothers and their companions have to determine what happened, who or what died, and how. This may be particularly difficult when the meanings of who or what the entity is differ for all involved. In some cases, patient-parents had to reconcile their other children’s dreams for their sibling (or siblings) with their own concerns and hopes for their gestating fetus-baby. Further complicating concerns over reproductive decisions are cases in which patient-mothers and their companions hypothesize how fetoscopy procedures may or may not affect the
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surviving co-twin. Within a tenuous social context in which one person’s decisions for a pregnancy may conflict with another’s, the feelings and discussions of potential maternal blame and failure are heightened. Particularly in cases of ligation, many must reconcile conflicting constructions of “nurturing motherhood” (e.g., protecting children and getting care for ill children) with the problematic context in which the pregnancy is experienced. Given the social and cultural setting in which pregnancy loss is often not recognized or discussed, fetal imagery such as ultrasound images and fetoscopy baby pictures, in conjunction with going through the fetoscopy experience, may prove emotionally helpful to women who lose their pregnancies (however, as detailed in chapter 3, the images remain political artifacts that entrench the public fetus as a cultural icon).10 Fetal images and other tokens acquired during gestation show the loss was “real” (Layne 1992). In the fetoscopic image, “baby parts” are relatively clear and likely more convincing than a fuzzy black and white sonogram or abstract fetal monitor tape. Although the visuals may make loss particularly traumatic because it makes the baby real, at the same time ultrasound images and fetoscopy baby pictures may give patient-mothers suffering pregnancy loss scientific or medical proof of who or what they lost (i.e., a fetus-baby). Complex networks create complex pregnancies; it is impossible and nonsensical to assume that proper care for a woman seeking (or being offered) fetoscopy could or should assume that living babies are proof of a success and that all patient-mothers share the same understandings of success. Yet not being able to define what constitutes a clear “success” is counterintuitive to medical assumptions and goals. Although I do not wish to minimize the pain of pregnancy loss, it is imperative that loss not be limited to the physiological nonfunction of a product of conception. Loss may involve more subtle definitions, including the birth of an infirm baby, the loss of a wanted baby, and abandonment by or disagreement within a social network. Just as the preceding may constitute loss, their corollaries may constitute success: the birth of an ill yet wanted baby, the loss of an unwanted fetus-baby-entity, and the support of a social network. It is important to understand these variations and the
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subtleties within them. Rapp has shown that patient decisions to undergo or abstain from fetal testing are influenced by their cultural background and experiences (Rapp 1999). A similar finding is seen in definitions of fetoscopic success. Individual patient-mothers, their families, and their social and cultural backgrounds form a context in which procedures that end in both life and death of wanted fetus-babies may or not be regarded as successful.
8 Final Thoughts on Fetoscopy
How a woman sees herself in conjunction with how she sees her unborn lays the groundwork for understanding the complex context in which fetoscopy is experienced. It has been the goal of this work to investigate fetoscopy in theory and practice. I examined fetoscopy within contested theoretical terrain and offered glimpses into the lives of fetoscopy patient-mothers, their families, and health care providers. My political positioning should be clear: I wish to present findings in a manner that assists future fetoscopy patient-parents and providers. To achieve this end, I acknowledge the political implications of fetoscopy delivery, including adding to the creation of the fetal patient, using research monies to develop boutique medicine in lieu of other wide-ranging prenatal technologies, and creating clinical settings in which maternal blame may be heightened. At the same time, I recognize that fetoscopy offers a number of benefits, including allowing some women a last chance to “save the baby,” advancing medical knowledge (e.g., pregnancy etiology), and adding to discussions of pregnancy loss and success. In short, fetoscopy is both beneficial and detrimental to women-patients and the larger cultural milieu in which they live. The key to successful fetoscopy is understanding its potential benefits and pitfalls and working with individual patient-parents and their caregivers to achieve a desired end. This is difficult and time-consuming, but ultimately worth the effort. While at Holy Names I was constantly moved by how much time Kay and Martinez took with their patients. It is this personal approach that I believe made some patient-mothers content in their decisions and ultimately able to accept that, although painful endings did happen, they were not alone in their grief, physically
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or emotionally. What made fetoscopy work at Holy Names was that it was accepted as emotional work shared by all. Many patient-mothers whom I interviewed hoped their stories would reach other potential patient-mothers and give those now facing emotionally traumatic decision making insight. I also interviewed individuals who were concerned about the future of fetoscopy and wondered where and if it belonged in perinatal medicine. Still others hoped that fetoscopy would quickly find its way to the forefront of prenatal diagnosis and therapy and, with it, usher in a new era of fetal treatment, medical funding, and social acceptance. While this work does not present all issues raised by informants, their conversations, stories, hopes, and fears form the basis of my analysis, and it is ultimately for them that I have compiled this work in the hope that they and others find it useful in making sense of their experiences. When I left Holy Names in 1998, fetoscopy was still a struggling procedure with a questionable future at the hospital. By 2005, fetoscopy was a highlighted procedure of a newly formed department and was joining in the international growth of the specialty. Today it continues to grow worldwide and Martinez and some of the fetoscopy team have found a new home for their research in a teaching hospital. How this move will affect fetoscopy continues to be seen. However, commenting on fetoscopy’s development in 1998, Martinez explained: Well, I think we’ve seen what it can do. We have not seen everything it can do. I don’t think it’ll ever be replaced by any other imaging technique—ultrasound, MRI, or anything else . . . the resolution that it provides is far beyond anything else that currently exists, or that I can imagine will exist. So in terms of diagnosis, it remains the most precise technique in terms of resolution to identify, at least external structures in the fetus, that are doubtful. That are questionable as to whether they’re normal. In terms of surgery, there is a list of potential fetal [conditions] that it could be used in and [it will only be] a matter of time to get to address them. Time and resources. But potentially, fetoscopy will be—or can be—the imaging technique required to solve the big list of fetal [conditions and] diseases that we want to address. I’m [doing] it and other physicians in the world are doing it. [There] are distinct groups . . . and what is happening actually is that the different groups are contributing with their own findings and their own experience to the overall development of the technique. I guess we’re all going to [build] it and I’m happy to take part in it.
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Only time will tell which fetal conditions will be successfully treated by fetoscopy and taken up as routinized procedures, but Martinez and other fetoscopy practitioners believe that continued work in fetoscopy will lead to better pregnancy outcomes. Although some physicians’ hopes may be high, fetoscopy development occurs within a political context in which medical procedures and women’s bodies are inscribed with cultural readings of acceptability. At all times, fetoscopy development and dissemination is value-laden, taking place within politically charged environments during highly emotional events for patient-parents and their caregivers. These contexts do affect fetoscopy decision making and must not be ignored. Women seeking fetoscopy and medical workers providing treatment live and work within a context that is emotionally traumatic. Although physicians and patient-parents may have different reasons for pursuing fetoscopy, they often shared the hope that wanted babies would be born following fetoscopic treatment. Of the characteristics that patientparents shared, perhaps the most common was hope (on the hope and progress narratives of parents with disabled children, see e.g., Landsman 1998).1 Patient-parents commonly defined their situations in ways that allowed them to remain hopeful and to justify their hopefulness. Parentsin-the-making or already-parents would travel many miles to undergo a not yet fully accepted procedure in the hope of saving their fetus-babies.2 Although many patient-mothers were hopeful, many also remained critically aware of the future difficulties that such decision making implied. Patient-mothers and physicians alike would comment on the novelty of the procedures while simultaneously suggesting that these new ventures often brought both intended and unintended consequences. Although it is possible to identify similarities among patient-mothers, it is imperative not to forget the differences that separate them. When I asked Martinez if he saw any commonalties in his patients, he replied: Well, they all have in common that they have decided that they don’t want to interrupt their pregnancies because of what they have been diagnosed with. And that feeling ranges between—“there is no way I could interrupt the pregnancy” to, “we’ll interrupt it if everything fails.” But at least they have that in common. They want to give their baby a chance. But they come from different corners and sides of the world, and of society. Wealthy, poor, intelligent, not so intelligent, educated, uneducated. From every aspect, of every corner. So there has already
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been, and we’ve mentioned this before, there has already been a self-selected process by the time they get to us, unless they are absolutely local and they haven’t seen anybody else. In the sense that they have been through a diagnostic workup, they have been through counseling sessions at their sites of origin, and when everything has been presented and discussed with them, they have decided that they want to take the next step, which is coming here for either diagnosis or treatment. So this is the common link between them. There is no economical, cultural, racial or any other similarity between them. They are all very different. (italics added)
My research reveals a broad range of reactions within individual narratives and between individual narratives; however, unlike Martinez’s assessment, most of the patient-mothers that I met and interviewed were somewhat homogenous. Patient-mothers and their companions that I observed at Holy Names were generally professionals in their 20s and 30s, Christian (though not always practicing), and most were white. Many fetoscopy patient-mothers were scientifically savvy and looking for cutting-edge procedures to assist them. Many had insurance and access to prenatal care including obstetricians and perinatologists who, even if they did not want to refer them for fetoscopic treatment or diagnosis, were able to identify their conditions and offer medical suggestions including termination. Some patient-mothers found fetoscopy on the Internet, and others turned to friends or medical searches. Although the fetoscopy patient-mothers in this study come from a variety of geographical locations, they are similar in that they tended to be highly educated and many were adept at understanding the often frightening and confusing statistics that described their conditions. Beyond these important similarities, they also represented a variety of nuanced differences (as presented in this work), and their reactions to procedures and outcomes differed. The fetoscopy patient-mothers that appear within this work lived within a sociomedical context that often valued heroic means to save desperately wanted “babies”; however, desperation and foolishness are not synonymous. Many were well versed on what their personal limitations were for their pregnancies and how it was that they decided fetoscopy was their best, and in some cases, only option. Use of fetoscopy is growing, and some physicians have invited interest and comments from people outside of their traditional research groups (e.g., Reece and Homko 1994). It is responsible to reply
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(Blizzard 2000). In 2002, Rubén Quintero, a leading fetoscopic surgeon edited one of the few manuscripts on fetoscopy available. In the forward he notes, “It has taken many years for the writing of this book to be appropriate. Five years ago, I thought it was too early. Five years later, I think it is overdue” (Quintero 2002b: xii). Indeed, fetoscopy development, use, and sociocultural familiarity is increasing at an astounding and possibly alarming rate. Depending on one’s views, this is either a long awaited, much anticipated event, or a tragic misuse of resources and an offensive sociocultural development. Based on my research, it is both. Fetoscopy is quickly gaining media attention and national recognition. Fetoscopic procedures have been covered in diverse local and national news programs including the CBS Evening News, Dateline NBC, and 20/20; newspapers such as The San Francisco Chronicle and The New York Times; and popular magazines including Parents and Women’s World. As fetoscopy continues to gain media attention, critical attention must be placed on the rhetoric presenting it to the general public. How do reports position it? Do interviewed moms have one, two, or no surviving babies? As demonstrated in this book, a living baby does not guarantee a “successful” procedure, just as no baby does not guarantee an “unsuccessful” procedure. While on site I was continually disheartened that reporters frequently wanted to showcase fetoscopy moms with two babies (to show success and instill hope). Some hospital administrators also wanted only successful cases reported in the media (i.e., TTTS laser surgery ending in two “babies”). To my aggravation, and that of some of the fetoscopy workers, this is not the “real” context of fetoscopy. In reality, babies die and mothers mourn. Not to address this publicly threatens continued shrouding of pregnancy loss in silence and entrenching the cultural myth of babies as products and reproductive technologies and their users as heroic (c.f., Layne 2003). It is imperative to remain critical of the media’s presentation of “ideal” fetoscopy patients and outcomes that build on assumptions of normalcy and progress. A woman’s right to “reproductive choice” is a hollow political position if she cannot gain access to wanted services. As part of U.S. health care practices, fetoscopy continues to be boutique medicine that is unavailable to a large number of women. Many may not need or want
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fetoscopy; however, those who want it may not be able to afford it or pass local ethics review (e.g., to undergo ligation on a still viable fetus). When examining access, it is imperative to investigate the financial limits on real “choice.” In particular, state-administered Medicaid is highly problematic. For example, Holy Names is legally required to accept instate Medicaid patients, but not those from out of state. According to one member of the fetoscopy team, out-of-state Medicaid programs simply do not cover the expenses that fetoscopy entails. Although not covering rare boutique procedures may make political sense, its localized effects are clear: poor mothers may lose a higher percentage of fetusbabies diagnosed with conditions amenable to fetoscopic treatment. Similar analyses of resource allocation are applicable beyond Medicaid; private insurance companies may not cover fetoscopy. When procedures are covered, it is also necessary to ask how much of the experience is covered. For example, beyond the surgery, will insurance also pay for last-minute airline tickets and possible hotel stays for patient-mothers and their supporters?3 Fetoscopy does not stand “outside” of political debates; it is a medical procedure infused with the values and assumptions of those who create and use it, and the politics and economics of the environment in which it is delivered. Labeling fetoscopy value-laden or political does not imply that the procedure is “bad.” Instead of finding ways to “depoliticize” fetoscopic procedures, its users and developers may instead think critically about what values it embodies and find ways to expand its use to different cultural and social groups. Patient-mother attitudes toward the number and health of their fetus-babies vary. Use and development of fetoscopy should recognize these variations, delivering care in ways that accept differences in decision making while critically considering their economic undercurrents. Further analyses of fetoscopy should also investigate variances in fetoscopy development at various sites in the United States and abroad. At Holy Names I found that women and their supporters shape readings of fetoscopic procedures (i.e., patient-mother reactions to fetoscopy statistics and access affect provider assumptions about the technology). Comparison studies with other clinics will identify possible similar expe-
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riences elsewhere and their meaning to developers and users of the procedures. Just as meanings of fetoscopy vary among local users, specific sites may have their own ecologies of knowledge or local cultures. Holy Names is a Catholic hospital. It is reasonable to assume that fetoscopy will develop characteristics distinctive to this context. How might fetoscopy differ if it develops in a site infused with other religious, cultural, and political persuasions? A question to consider: Is there a U.S., Catholic fetoscopy, and how might it differ from, for example, a French, secular fetoscopy? As Martinez now takes fetoscopy to a new secular medical school, it will be intriguing to watch its future development. This analysis shows that “fetoscopy” in one setting may not be “fetoscopy” in another. For example, a physician may see a procedure as a vehicle to deliver treatment to an unborn patient and a mother may see the same procedure as a last chance to save her baby. Although these perspectives may not be widely divergent, they do imply cultural, social, and emotional differences in reasons for consent and use of newly developing procedures. As fetoscopy development and use spreads (which I believe it will and should under multiple critical and cautious eyes), such information may prove useful at larger policy levels. Although physicians, nurses, patient-parents, and I have noted that there are positives and negatives associated with fetoscopy, during my research I was persuaded by interviews and observations that, despite its sometimes problematic development and use, it does offer some patient-parents a potentially empowering opportunity to try and save wanted pregnancies. In this light, I support its development, but remain cautious and warn that it must develop with patient difference in mind. To reiterate, this position may be politically problematic not only because of negative social consequences of reproductive technologies for women in larger cultural contexts (e.g., they further medicalize women’s bodies and entrench fetal personhood; see e.g., Casper 1998; Rowland 1992), but also because the political economy of fetoscopy does not clearly afford the greatest good from the resources used. On the other hand, women’s reproductive struggles also include the pain, confusion, and sense of loss experienced by many women with troubled
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pregnancies. From my investigation I believe that fetoscopy may help ease some of the reproductive struggles of women desperately working to save wanted pregnancies. Medical procedures and developments are not outside of human control; they are social constructions fashioned by many decisions and experiences. Critical investigation of fetoscopic procedures and its developers and users should be multifaceted, bringing to the fore emotional decisions and cultural assumptions. In 1998 Margaret O’Brien, looking back to her 1995 ligation for TTTS, said simply, “After all of that I have a beautiful daughter who’s . . . absolutely the love of my life—and I have her and I guess that’s all that matters at this point, and that’s really all that mattered to begin with.” Any analysis of fetoscopy begs the question, “What matters?” My response is that patient-parents, their caregivers, and social networks matter. Their similarities and differences matter. Their hopes and fears matter. Fetoscopy lies at the intersections of life and death, hope and despair. It brings to the fore moral and ethical questions rooted in social circumstance and specific cultural contexts. The compelling, traumatic, and hopeful stories that fetoscopy patient-parents and their providers shared with me are powerful. It is difficult not to be moved by such emotion, and often I cried both with and for particular patient-mothers and their experiences. Although some physicians may make arguments against procedures, even these may not be enough to sway a desperate woman seeking treatment for her ill or dying fetus-baby who hopes hers will be the “miracle baby” who overcomes even the most overwhelming odds and dire circumstances. Whether she was a patient-mother who knew that her fetus-babies may not survive the week, or a seasoned operating room nurse who would quietly pray when a fetal heart beat disappeared from a surgical monitor, persons who agreed to be interviewed and observed often did so openly, honestly, and critically. Few informants were prepared to accept or reject fetoscopy fully. Most were concerned about the social and cultural implications of its use. Reflecting their positions, this book is not a final say on fetoscopy and its social, moral, and ethical outcomes; rather it is an entry point for beginning to understand better how people are shaping fetoscopy and in turn being shaped by it.4
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Like Casper’s analysis of open fetal surgery, Rapp’s critique of amniocentesis, and Layne’s account of pregnancy loss, this exploration of fetoscopy was created through my personal and professional interactions with others. It is an examination of the multifaceted meaning-making undertaken at one site by one researcher. To understand fetoscopy fully, more analyses must be pursued within the United States and abroad to offer comparative assessments of the uses and meanings of the procedures. Casper’s and my analyses of fetal surgery vary in method and critique, but the knowledge gained by addressing both in conversation will yield greater understanding. It is my hope that others join in this ongoing dialogue to understand the events better and find ways to improve overall patient-parent care. Similarly, just as one theorist’s voice cannot and should not speak for all fetoscopy experiences, many fields of inquiry must also join in these examinations. In particular, I hope that the fields of science and technology studies (STS), bioethics, and medical anthropology will form disciplinary and interdisciplinary approaches to future studies. Together, these fields (and countless others) can shed theoretical and pragmatic light on these highly emotional experiences with not yet fully stabilized technology. As a field driven to pursue the ways in which science, technology, and society form a hermeneutic circle that continually reshapes itself, STS finds questions of medical technology development particularly useful. Such questions might include: Who develops the procedures and where? Which procedures are sanctioned and by what body (e.g., FDA, Catholic church, hospital policies)? What role might a patientmother take as an active “co-constructor” of the procedures, and how might she be acknowledged for her willingness to undergo fetoscopy procedures? Similarly, the field of bioethics offers a plethora of questions to be studied: How might perinatologists work to reconcile the maternal-fetal conflict in cases of fetoscopy? What are the similarities and differences separating personhood, human, and baby in acardiac twinning? How can financial inequalities in health care be overcome to give all women needing or wanting fetoscopy access, and the corollary—how can we ensure that even though women may be offered the procedure, they are
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not coerced into pursuing it in an effort to minimize maternal blame or guilt? Finally, the field of medical anthropology offers great insights into the cultural differences separating varying forms of fetoscopy. The United States is multicultural, and fetoscopy is also being developed abroad. As a variety of individuals come in contact with these procedures, how will culturally specific meanings of race, gender, and profession play out? Who will offer the procedure, and what rhetoric will entrench or threaten its use? How might patient-parents and fetus-babies alter as fetoscopy moves across cultures, and how will these individuals affect fetoscopy? These questions are but a few that the fields of STS, bioethics, and medical anthropology might consider. Perhaps even more important, none of these questions are the sole province of any one discipline. While each field may be particularly well suited to address certain questions through its own methods and theories, each field can and should begin to address aspects of these and other questions. In 1998 Martinez said that fetoscopy needed a critical mass of practioners and supporters to ensure its development. Returning to his words, Martinez explained, “[We need] . . . a group of subspecialists in the different areas that have an interest in fetal therapy . . . [who] you can talk to about your ideas and they could share . . . their ideas, concerns, views, etc.” From a medical perspective, Martinez is right. From a social scientific view, he is also right. Just as fetoscopy needs professionals with expertise in perinatology, nursing, pathology, and anesthesia to ensure its medical growth, it similarly needs professionals from the humanities and social sciences working together to find new avenues of social analysis and critique to better understand the sociocultural implications of its use and development. Any future study should acknowledge and, to a lesser extent, anticipate the lived experiences of fetoscopic procedures; in avoiding patientmothers or their social networks or minimizing their claims through rhetoric or project protocol, we fail to address the “reality” of fetoscopy procedures. While on site and afterwards, I have been constantly moved and emotionally torn by the compassion, fear, hope, anxiety, and joy sur-
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rounding fetoscopy decision making. Some patient-parents and fetoscopy workers will agree with my major findings, and some will not. My hope is that even those who disagree with parts of this analysis believe that this project was undertaken, analyzed, and reported in a reasonable manner. I recognize the limitations of the analysis; at the same time, I hope this research is incorporated into a sociocultural, medical project that will empower patient-mothers and their social networks, and assist their medical providers in arriving at wanted pregnancy outcomes.
Notes
Prologue 1. Embryofetoscopy is sometimes used to indicate that the procedure is being conducted on either an embryo or a fetus. Fetoscopy, on the other hand, tends to signify that the procedure is being used on a fetus. 2. Emotional work is a term used in social science investigations that highlights activities in which work takes an invisible, psychological toll on a person. Often it is used to underscore that although individuals seem fine on the outside, the efforts to get through traumatic experiences takes energy and daily work. 3. For an example of emotional work, see Scheper-Hughes 1992; on invisibility of work, see e.g. Star 1995b. 4. Although I did not record the conversation (it was on my home phone), these words and thoughts were what I remember of the conversation. The quotations are intended to give the emotional impact of the call and are not verbatim. 5. I base these descriptions and statistics on information that the nonprofit research center affiliated with the hospital provides to the public. 6. Two informational clearinghouses offer extensive information on TTTS: The Twin to Twin Transfusion Syndrome Foundation and Twin Hope . The statistics offered in this description are available from these Web sites. Both The Twin to Twin Transfusion Syndrome Foundation and Twin Hope are located in the United States; similar organizations exist in Europe, including the United Kingdom’s Twin2Twin . 7. For extensive medical descriptions on the merits of laser surgery to treat TTTS, see e.g., Quintero et al. 1998 and Ville et al. 1997. 8. At Holy Names Hospital, all ligation cases must pass an individual ethics review. This review includes medical professionals, clerical leaders, and hospital administrators.
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Chapter 2 1. Because different research groups develop their own in utero endoscopic techniques (e.g., entering the womb transcervically or transabdominally), it is difficult to offer one complete, detailed definition of fetoscopy. Therefore, a general definition is helpful to enhance basic understanding of how individual clinics experience, offer, and define particular procedures (e.g., Blizzard 2000). 2. For extensive descriptions of diagnostic procedures, see Quintero, Abuhamad, et al. 1993; Reece 1999, 2002; Reece et al. 1994, 1997. 3. The size of the incision depends on the diameter of the trocar (medical funnel that is pushed through the abdominal wall and into the uterus) used during surgery. One research group reports using 1/8-inch incisions through which they access the fetal patient. The incisions do not require stitches, and a simple BandAid is used to keep the area clean. At Holy Names Hospital, Band-Aids were at times decorated with cartoon characters, further suggesting that surgery was conducted on an unborn “baby.” 4. For an extensive social analysis including the history of open fetal surgery, see Monica Casper’s The Making of the Unborn Patient: A Social Anatomy of Fetal Surgery. 5. Some theorists examine all of these issues together (e.g., Layne 2003). 6. Complicating a tension of potentially conflicting identities during fetoscopic surgery, it plays out in a cultural context that often uncritically accepts the notion of “maternal bonding” or belief in an embodied, emotional relationship between the unborn and pregnant woman. This concept, though often accepted in the medical literature (and unquestionably at Holy Names Hospital), has come under sharp criticism by feminist theorists who argue that “bonding” suggests an essentialized relationship between a mother and her child instead of a critical exploration of how a pregnant woman experiences her particular pregnancy. 7. Although I was grateful for the interest, time, and honesty that many patientparents brought to their interviews, it is important to recognize that a single interview during a clinical and emotional experience is necessarily limited. There is no possibility for longitudinal follow-up, and great care must be exerted not to harm the patient-mother by asking particularly painful questions following an already stressful event. In my efforts not to distress patient-mothers more than they already were, I used semi-structured, open-ended questions in my interviews. I asked them to tell me about themselves and about their experiences with fetoscopy. With this approach, patient-mothers were encouraged to share what they wished, but not pushed to reveal issues they wished to keep to themselves (particularly with current patient-parents; with former patient-mothers who had surgery years earlier, I was more likely to push follow-up questions). In either case, single interviews, regardless of the length of the interview, necessarily capture a snapshot of an experience as determined by the interviewee on that particular day. It is likely that an interview on a different day, while still holding to some of the major themes in particular experiences, may bring to the fore
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other issues that she had not thought important to her story at a different time. For criticisms of single interviews in clinical settings, see Browner 1999. 8. In this book, I use the term “nurse” to refer to individuals with the following degrees and/or the licenses: CNA (certified nurse anesthetist), RN (registered nurse), LPN (licensed practical nurse), nursing assistant, and surgical technician. I do not intend for this categorization to mislead or allude to interchangeable skills. Each individual has specialized skills and fills an important and different role in fetoscopy experiences. My intention in categorizing all these paramedical positions as “nurse” is to provide informants as much anonymity as possible. In accomplishing this task, I risk minimizing areas of expertise, though, that is not my intent. 9. When Martinez arrived at Holy Names, they instituted a fetoscopy ethics board (beyond the larger institutional review board) to oversee individual cases. The ethics board convenes when pressing cases require immediate action. The board includes, among others, an administrator, representatives from pastoral care, social services, and a handful of nurses and physicians who rotate on and off the board. When fetoscopy was first instituted at Holy Names, the ethics board convened for all procedures; however, over time certain procedures are now regarded as acceptable and do not require individual assessment. In cases involving ligation, the ethics board must convene to discuss the case. At these meetings Martinez explains the case, its likelihood for fetal viability, and the reasons why he believes fetoscopic treatment is warranted. Members ask questions, and he must answer them. 10. I do not believe that it would have hurt my relationship with Martinez if I decided to attend the ethics meetings, just as I do not think it helped that I did not. 11. It is important to recognize that not all of my informants were patientmothers or women. The variety of informants further exacerbates “distance.” 12. On confusions about what constitutes feminist research, see e.g., DeVault 1999. For a critical discussion of conservative, moderate, and radical constructivism, see e.g., Hess 1997. 13. Similar concerns and actions have been reported in social analyses of open fetal surgery and amniocentesis (e.g., Casper 1998; Rapp 1999, respectively). 14. For criticisms of using pseudonyms for modern-day, well-known (in medical spheres) health care organizations, see e.g., Manning 1998. 15. On the medicalization of anthropology and ethnographer’s willingness to accept medicalized contexts, see e.g., Browner 1999.
Chapter 3 1. For a discussion of the legal precedence of fetal rights, see e.g., Johnsen 1986; Lenow 1983; Roth 1999; Thampapillai D. (2005).
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2. Supporting activities that use fetal imagery and fetal subjectivity such as making the fetus an in utero patient can limit the theoretical positioning of scholarly work when theorists realize that their critique simultaneously entrenches the fetus as a subject. Recent critiques of the limits of this approach and the need to move beyond it to find theoretical space to theorize the in utero fetus as a subject (i.e., an entity that may include agency) are now occurring in social scientific literatures. To begin this exploration, Lynn Morgan and Meredith Michaels edited the groundbreaking anthology, Fetal Subjects, Feminist Positions, (1999). The book includes contributions from a number of highly respected theorists of feminism, pregnancy, and its meaning for the female body including Lynn Morgan, Meredith Michaels, Barbara Duden, Kathryn Addelson, Sarah Franklin, Cynthia Daniels, Monica Casper, Carol Stabile, Carol Mason, Sherry Millner, Ernest Larsen, Linda Layne, Faye Ginsberg, Rayna Rapp, and Valerie Hartouni. 3. Some social critiques have focused on the imagery of the fetus as a freefloating astronaut in outer/inner space. Many of these pictures became iconographic during the 1970s. In particular, Swedish photographer Lennart Nilsson’s images of the embryo and fetus appeared in the widespread publication of Life Magazine, further entrenching the cultural narrative of a free-floating fetus (i.e., not connected to a woman via an umbilical cord). Further, the motion picture 2001: A Space Odyssey includes perhaps the best-known imagery of the fetus as astronaut in scenes of a fetus floating freely in outer space that suggest the fetal innocence and autonomy that many theorists critique. For an excellent examination of the fetus as astronaut, see e.g., Rothman 1986. 4. Patient-parents did not receive photos of dead fetuses (i.e., fetuses that had been ligated during surgery). 5. Some nurses at Holy Names delighted in giving expectant parents pictures of their in utero fetus-babies because it was a gift that only they could offer; however, in so doing, they also further entrenched the public fetus as a spectacle while making the personal baby real. There are multiple fine lines between helping an individual patient-mother through her pregnancy experience and affecting a larger sociocultural context through these actions. When I first learned that patient-mothers sometimes received in utero pictures of their pregnancies, I was shocked and believed this to be a terribly shortsighted decision; the larger cultural effects were too great to support such activities. However, over time I witnessed patient-mothers and their companions reacting to the images and realized that, not unlike an ink footprint or school photo, the image often helped them to see their “baby” and make themselves “parents.” 6. The conditions and syndromes listed by Quintero as diagnosable with this procedure include Apert, Bardei Bledl, Carpenter, CHILD, EEC, Escobar, Hydantain, trimethadone, valproate, Variella, fibryl condryl degenesil, HoltORAM, Meckel-Gruber, Miller, and Treacher-Collins (Quintero 2002e:30). Unfortunately, of these conditions only Abert, Carpenter, CHILD, valproate, and Miller have entries in the NORD database.
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7. I base these statements on interviews with patient-mothers who underwent both diagnostic and operative fetoscopy. What they had in common was that all were awake and watching the video monitor. 8. For further discussion of the political concept of liberal individualism in reproduction, see e.g., Blizzard 2005b; Franklin 1991; Rothman 1989. 9. Rapp explains the difficulties of “individual decisions” when analyzing why one African American couple may have refused amniocentesis. In her analysis, Rapp finds that the woman and her husband were affected by their local community and kin whose consciousness and concerns over inappropriate human experimentation may have been heightened: “[The ability to choose or refuse testing] seems to be at once the product of individual choice, contextualized by kin and community pressure, and also a response to racially differentiated sentiments and histories in relation to medical intervention and experimentation. The interplay of social history and individual volition, of collective position and personal choice, in short, the imbrication of structure and agency” (Rapp 1999:167). On “decisions,” see e.g., Rapp 1999; on the importance of analyzing the social context of reproductive technology use, see e.g., Lippman 1992; Petchesky 1987; Wajcman on Stansworth 1991. 10. For criticisms of the medical and production models that privilege the liberal individual over communal approaches, see e.g., Menzies 1994. 11. For further illustrations, see e.g., Gregg 1995; Rapp 1999; Rothman 1986; on the limits of tests and potential risks, see e.g., Hubbard 1982. 12. It is important to note that the incidence of multiple births has increased in the United States and Canada (e.g., Hoyert 1995; Launslager 1994). This increase may lead to a higher number of TTTS cases (e.g., Hecher et al. 1999). 13. Nonetheless, reproductive experiences and procedures are often cast in the light of right and wrong as determined through religious doctrine and scientific understanding. 14. I asked Jenny if she had reported the nurse’s behavior to a supervisor. She had not.
Chapter 4 1. Many theorists examine the ways in which risk is determined in pregnancy and how the profession of obstetrics seeks control over the pregnant body in the name of controlling such risk. For further critique, see e.g., Arney 1982; MacDonald 1994; Oakley 1984, on the disciplined body as a figure within a medicalized context, see e.g., Foucault 1973. 2. Intriguingly, depending on the interviewee, the sociocultural risks associated with fetoscopy decision making are as daunting, if not more so, than the physiological risks. For example, some patient-parents may think that the risks of undergoing fetoscopy include family disruptions surrounding the loss of faith in
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religion or medicine; whereas some physicians may see the sociocultural risks as including concerns for mental health and fear of potential lawsuits. Just as some patient-parents (and possibly their physicians) need to know that they have done everything they could to help “babies,” others might be concerned by the risk of not being able to live with themselves if their decision brought about the death of an unborn “baby” (this includes the risk that fetal-baby death occurs because they did not intervene in the pregnancy). 3. A notable exception to this trend is the September 2005 issue of Clinical Obstetrics and Gynecology, in which parents and social theorists alike were asked to contribute to the special issue on “Parental Voices.” This medically bold move by the editorial board of the journal may help to increase the dialogues surrounding the social, cultural, and emotional effects of high-risk pregnancy. 4. In an effort to extend as much anonymity as possible, I do not give personal information (e.g., age, specialty, etc.) on perinatal partners. 5. I do not wish to imply that research nurses are not caring or compassionate. My point is that the goal and context of nonresearch nurses is more specific than a research nurse who must simultaneously care for the patient while balancing other issues such as extensive data collection. 6. When a local patient-mother was undergoing treatment, the fetoscopy team had the rare chance to take part in the follow-up appointments and, in some cases, to be at the birth. These moments were so rare and special that the fetoscopy team took particular pride in these events. To illustrate, a large photo hangs in Kay’s office that was taken shortly after a local patient-mother with TTTS gave birth to her two healthy sons. In the photo Martinez, Kay, and Becky are standing around the head of the patient-mother and all are smiling proudly. In fact, this mom experienced some degree of celebrity as local television stations followed her pregnancy and the eventual birth. 7. Moira is a member of the fetoscopy surgical team. Her comments refer to a case in which the surgical team discussed and came to terms with a poor surgical outcome. 8. It is imperative not to separate the information attained from the power structures in which it is offered. Even though some nurses may approach Martinez with questions regarding fetoscopy and patient care, few indicated that they offered him criticisms. The separation between professional power is clear: even the strongest-willed nurse may find it difficult to criticize procedures to the physician who appears to be the catalyst to its growth. 9. To be clear, Fran believes that Dr. Miller and Dr. Martinez knew each other beforehand and that Miller had trained with Martinez at an earlier point in his career. 10. It is intriguing that Jean readily brings economics into her explanation. Although the physician views fetoscopy as experimental and thus risky, Jean believed that her insurance company would not cover such an experimental procedure. The fact that she would give more weight to her insurance company in
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identifying what procedures were experiential, and by extension risky, than to her physician’s recommendation speaks to the power of insurance companies in promoting medical procedures as either acceptable or unacceptable in the eyes of their clients. 11. It is possible that patients with referring physicians who are allies of fetoscopy unfairly push their patients into treatment, just as it is possible that referring physicians who do not support fetoscopy unfairly dissuade their patients from fetoscopy.
Chapter 5 1. It should be pointed out that nearly every operative procedure incorporates some form of visual diagnosis (e.g., finding the correct fetal part for surgery). 2. As briefly described earlier, in the cases that I witnessed, fetoscopy required that the physician insert a trocar into the womb under ultrasound guidance. In some cases of needle embryofetoscopy, instead of using a trocar, the scope is held within the needlelike compartment (e.g., Reece et al. 1997). At Holy Names Hospital, all diagnostic cases used trocars. 3. As Reece indicates, from a medical standpoint, only time will tell if needle embryofetoscopy will take off as a prenatal technology. I join his caution from a social scientific view, and add that only time and attention to larger cultural politics will tell us when and if such uses of the technologies will be deemed appropriate in the United States. 4. The disorder is so rare, I select not to give its actual name to provide Linda with as much anonymity as possible. 5. Bladder obstructions are particularly unique in that they affect more male than female fetuses. 6. When iatrogenic (physician-induced) ruptures occur, it is possible that the membranes will heal on their own, thereby not needing surgery.
Chapter 6 1. For example, a fetus that develops without a head may not be viewed by patient-parents as a “baby” but as a “tumor” or “mass.” 2. These statistics are offered by the nonprofit research group of which Martinez was a member. 3. Although she was not undergoing ligation for TTTS, Lucy Dover (a woman undergoing ligation for her acardiac/acrania daughter) had a similar concern. Lucy wondered if her surviving daughter might be missing “something.” As I interviewed Lucy, she reflected on her potential culpability at having altered an innate part of her daughter’s development. She explained that when her daughter was a toddler, Lucy and her husband were considering having another child.
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Their daughter begged for a sister when she learned of her parents’ plans. Lucy was troubled by her daughter’s desire for a sister and explained, “that would always get to me because, like does she really know? Is she missing something?” In cases of ligation, patient-parents may feel guilty not only for consenting to the death of a wanted fetus-baby but also for cutting short or otherwise altering a portion of their surviving child’s psychosocial and emotional development. 4. For illustrations of incommensurate professional assumptions of what a product of conception “is,” see e.g., Kovit 1978. 5. Nonetheless, anticipation of a healthy single baby was still a future that mothers with acardiac twins could imagine. 6. When the sonographer turns to a specimen jar, it may be an indication of her medical training, thought collective, and ecology of knowledge that handles the event in a manner different from the mother. On thought collectives, see e.g., Fleck 1979; on ecology of knowledge, see e.g., Anspach 1993; Star 1995a. 7. It is important to note that Amy’s physician was not an obstetrician or perinatologist, but rather a general practitioner who still delivers babies. 8. Although it is intriguing that the research sonographer clearly objectified the acardius, leaving little cognitive space for subjectivity reconstruction, and that the general practitioner requested that the acardius be cleaned and brought to the patient-parents, it would be short-sighted to suggest that one context is more or less likely to objectify or subjectify an in utero entity. By drawing attention to these situations, I do not wish to make generalizations about larger thought styles or collectives; rather I wish to illustrate that not only are persons who are a part of patient-parent’s contexts co-constructors of acardiac pregnancies, but also their actions in response to the acardius (through dialogue or physical environment) may limit the ways in which patient-parents may draw from the acardius as a social amalgamation of many things, both subjective and objective. 9. It is important for medical providers to recognize that the uncertainty surrounding these delicate pregnancies does not necessarily indicate something “bad” occurred, and one should not consider this apparent confusion and cultural flexibility as medically detrimental. As physicians, nurses, and other medical providers read social scientific accounts of acardiac pregnancies and fetoscopy, I am concerned that there may be a tendency to solidify medical practices and rhetoric. In an effort to avoid confusion, medical providers may wish to define the acardius as a medical identity that should be handled and discussed in a medical environment (implying a favored ontological position). Although it is important for medical providers, patient-parents, and their families to anticipate and recognize the flexibility of the acardius, it is imperative that definitions and dialogues surrounding the acardius allow and reflect the flexibility of the lived experience. 10. All of the women I cite in this chapter revealed that they remain content with their decisions to undergo ligation.
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11. It is important to note that the separation of “baby” and “other” reinforces and builds on culturally constructed dichotomies. Numerous feminist theorists have illuminated the cultural construction of dichotomies. Many of these dichotomies assume or build on nature-culture, feminine-masculine, and emotional-rational divisions (see e.g., Martin 1987; MacCormack and Strathern 1980; Ortner 1974; Tuana 1993). Further, medical anthropologists, feminist bioethicists, and disability rights theorists also question abnormal-normal and sick-healthy distinctions and dichotomies (see e.g., Asch 1994; Ehrenreich and English 1979; Holmes and Purdy 1992). Many of these theorists argue that such distinctions often oversimplify complex relationships and entrench political inequalities. Ironically, some feminist analyses have used and reinforced other dichotomies such as being pregnant or not being pregnant and carrying either a fetus or a baby. Analyses of acardiac pregnancies and fetoscopy show that these dichotomies (and the states they imply) are not as simple as they appear.
Chapter 7 1. For general overviews of perinatal loss and advice to cope with and incorporate the loss into a life narrative, see e.g., Davis 1996; Ilse 1996; Theut et al. 1990. For a discussion on the differences in grief as an indicator of gestational age and gender of the grieving, see e.g., Goldbach et al. 1991. For a discussion of patterns of grief following pregnancy loss, see e.g., Sainsbury 1988; Xiaoquin and Lasker 1996. 2. Not all patient-parents wish to know the intricacies of their conditions. For a discussion of the desires of surgical patients wishing for distance from information on their conditions, see e.g., Katz 1999. 3. Particularly in cases where parents decide whether or not to seek treatment, the pregnancy may become more public. As such, family members and others close to the patient-parents may take on a larger role in defining the in utero entity. 4. For exploration of the child as angel in heaven, see e.g., Layne 1992; on hopeful narratives of mothers of children with disabilities, see e.g., Landsman 1998. 5. The degrees to which a dead or lost in utero entity was assimilated into a family varied. In some cases, the entities were clearly “dead” and the parents grieved the loss. In other cases, the entities were “lost” and parents, would-be parents, or women and their partners grieved accordingly. 6. Issues of family in heaven were not reserved for dead babies, but could also be seen in pregnancies in which no babies were lost. In 2005, I interviewed Monica Estes, a 29-year-old woman whose twins had recently turned one year old. She sought laser surgery for TTTS, and both babies survived. As noted earlier, Monica was a medical professional, and critical of her physician’s lack of sharing information with her regarding treatment options. As our interview
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progressed, I asked her if she had a spirituality and if it was affected by the surgery. She immediately said yes, but recognized that though it was important, it often took a back seat to the medical aspects of her case. However, no sooner had she told me this than she began to explain at length how important her husband’s newly deceased grandmother was in taking care of Monica’s developing babies. Before the grandmother died, she had ordered a medallion of Saint Christopher. The medallion arrived after she died, but Monica’s mother-in-law firmly believed that her mother, though now deceased, had intended the amulet to be for Monica. The grandmother thus plays two important roles in promoting the health and safety of her not-yet-born great-grandchildren: first, she ordered an amulet that would promote the wellness of her great-grandchildren; and second, once deceased the great-grandmother was able to look after the children in an angelic form. Monica’s case was particularly intriguing because the great-grandmother began looking after her great-grandchildren while she was alive and in Monica’s and her mother-in-law’s eyes, continued to look after them in her death. Of all the women that I interviewed, only Monica had a family member who was both a living and deceased caregiver during the course of the same troubled pregnancy. 7. Unfortunately for Veronica the cemetery is far away from her home. Although the knowledge that her daughters are physically near their grandfather is a comfort to the still grieving mother, the location of the cemetery is distressing because it keeps her from visiting as often as she prefers. 8. Fran Ford said that two of her lost babies (though born at different hospitals) were laid to rest in the same cemetery, in a section shared by the hospitals. Fran explained, “The second baby that I lost, he was buried by the . . . [hospital]. They have . . . like a mass burial for premature fetuses . . . this last one . . . I had her at a different hospital . . . but they are both buried at the same site. They have like a mass burial. I guess they have a huge piece of land . . . [where] they bury premature fetuses, and we didn’t have a funeral. We didn’t have a funeral.” She continued that there were no individual markers for the babies, only one. 9. On understanding events outside of power networks and limited definitions, such as woman/patient-centered definitions, see e.g., Menzies 1994. 10. At the hospital where I conducted my ethnography, the Department of Social Services ran a bereavement program designed to assist patient-parents through pregnancy loss (this program was for all pregnancy loss, including those not associated with fetoscopy). Among other services offered were giving patient-parents’ photos of their babies, baby blankets, footprints of their child, and other keepsakes.
Chapter 8 1. The other side of hope, despair, was readily identifiable in patient-parents as well. Many patient-parents were saddened by the prospect of losing a wanted
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pregnancy. On hearing the terrible news that their pregnancies were in danger, many patient-parents frantically sought help or opinions from other sources, including friends, family, physicians, clergy, and Internet searches. 2. In many cases, patient-mothers had “reasoned” hope drawn from statistics, medical and personal advice, as well as their own experiences. 3. To address issues of access and limited financial means, Holy Names workers establish payment plans for patient-mothers who lack the ability to pay “up front” (e.g., through insurance). Such plans are short-term solutions that are not always effective and fail to address underlying inequities. 4. It is deeply troubling, however, that fetoscopy is being developed in a political, economic context that privileges certain pregnancies (e.g., middle-class, educated women) at the expense of others. While I remain concerned over the sociopolitical and economic context in which U.S./Western medicine is carried out (including but not limited to reproductive encounters), fetoscopy patientmother stories form the backbone of this research and my experiences with them led me not only to analyze and write in a manner that is critical of the procedures they underwent, but also to find ways to help them make sense of their experiences and assist physicians in identifying more equitable, socioculturally aware processes for delivering a problematic yet compelling procedure.
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Index
Abortion, 44, 88–90, 122, 208. See also Termination Acardiac twinning, 9–10, 93–94, 159, 165–166, 208, 221 ligation as treatment, 172–181 Acardius, 160, 165 subject/object vacillation, 161–162, 172–181 Adams, Veronica, 101, 129, 169, 188, 195–196 Addelson, Sarah, 143–144 Ambiguous loss, 161–162, 172, 183 Amniocentesis, 64, 72, 145, 150–151, 221 compared to fetoscopy, 41, 43, 88, 141 Amniopatch, 149–155, 198 Amniotic band syndrome, 10–11, 79, 105, 146–149, 154 Amniotic membrane rupture caused by increased fluid, 16, 164 location of, 86, 152–155 potential fix, 86, 101–102, 152–155 unintended side effect, 32, 99–100, 149–150 Andrews, Christi, 103–104, 118–119, 120–122 Anesthesia, 28–29, 44, 80 Anthropology, 27, 50 medical, 221–222 point of view, 69 Ashford, Gloria, 124–125
Baby pictures, 78, 139, 206, 211 Baby as angel, 194 Bacon, Stephanie and Wayne, 96–97, 103, 199–200, 202–203 Bermúdez, C., 149 Bedrest, 94, 99 Bica, Camillo, C., 90 Bioethics, 221–222 Bladder obstruction, 9, 105, 129, 143–146, 154, 206 Blame, 36, 91, 202. See also Maternal blame and guilt Boss, Pauline, 161 Boukhari, Sophie, 88 Boutique medicine, 153–154, 213, 217–218 Brown, Kay, 25, 57, 62–63, 67–68, 78, 123, 126 Brown, Mary-Beth, 93, 96, 99, 177–178 Browner, Carole, 66 Bryan, Elizabeth, 190 Burke, Meredith, 90 Casper, Monica, 66–67, 69, 73, 75–76, 149, 221 Child in mind, 98, 189, 191 Child imagined, 188 Choice. See also Decision making critique of, 83–84 liberal individual, 83 reproductive, 21, 76, 82–87, 90 Chaplain. See Clergy
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Index
City Hospital, 51 Clergy, 92, 110–112, 111 disagreement with, 93–94, 96, 177 Collectives, 106–135 Contractions, 34, 38 Daniels, Carol and Craig, 95, 129–130, 170 Davis, Nancy, 90–91 Deceased baby/in utero entity holding, 40, 176, 191–193 keepsakes, 191, 211 living remembrances, 188 naming, 40 Decision making. See also Choice extended family conflict, 127–128 individual vs. community, 73, 105, 108 ligation, 38, 157–159 medical certainty, 55–56, 132 parental conflict, 36 potential cultural risk, 43, 75, 105, 215 rational, 95, 97 religion, 97 scientific (see Decision making, rational) success, interpretation of, 204–206, 218 Disability, 206–207 cerebral palsy, 85–86, 151, 207–208 neurological impairment, 20 rights, 84–85, 207 Disposal of fetal/in utero remains advice, 111 inclusion of deceased relatives, 195–199 legalities of, 111, 123–125 options, 38 parental uncertainty, 39, 173–174 reaction of others, 178–179 Doctrine of Double Effect, 89–91, 98, 122, 165 Doodling (drawing), 31, 125 Dover, Lucy, 71–72, 178–181
Ecologies of knowledge, 116, 219 Edwards, Amy, 94, 174–175, 180–181, 195 Emerson, Ramona, 85–86, 93, 207–208 Emotional work, 61, 84, 86, 214 Estes, Monica, 81–82, 131–132 Ethics committee, 37, 57–58, 91, 205, 218 Ethics meeting. See Ethics committee Ethnography, 41, 49, 51, 65–66, constructivist, 60–62, 178 critique of, 54–55 data in this work, 51–54 feminist, 60 Eugenics, 84, 207 Evans, Gail, 147–148 Facts, 55 Fear, 38, 99 theorizing, 61 Feminist problem of the fetus, 45 Fetoscopy classic, 42 diagnostic (embryofetoscopy), 42–43, 79, 87–88, 138–143 operative, 42, 44, 89, 143–149 Fetoscopy nurse, 26 Fetoscopy team, 28, 63, 116, 125–126 Fetal monitor, 33 Fetal politics, 44, 76–82, 85 Fetal rights, 44–46, 77, 83 Fetal subjectivity, 45 Fetus/in utero entity construction of, 46–47, 157–158, 176–178, 180, 184–185, 202–203 imagery, collected during surgery, 32, 80, 115, 138–139 imagery, parental interpretation of, 80, 154, 200–201, 210–211 killing, 36–37, 91, 98, 100, 102–103 patient, 45, 49, 76–78, 213, 219 personhood, 48, 157–158, 219, 221
Index public, 77–78, 80, 191, 211 surviving, 38 Fetus-baby, 49 Ford, Fran, 129 Firestein, Stephen, 48 Galto, Jenny, 101–102, 151–152, 198–199 Gene therapy, 43, 85, 141–142, 154 God abandonment by, 94 helping Him, 96–97 playing, 90 Graveyard. See Resting place Grief, 62 Heaven, 193–194, 196 Heroic measures, 92, 167, 216–217 Hofstra, Benjamin, 115 Holy Names Hospital, 24, 51 Hope as cultural narrative, 47 for future, 35, 147, 166–167, 215 offered by procedure, 63, 152, 166–167, 220 for pregnancy, 47, 99, 104, 209 theorizing, 61 Ilse, Sherokee, 191 Informed consent, 26–27, 29, 49, 122, 183, 189 Insider/outsider, 56, 58 Insurance, 20, 22–25, 28, 131, 218 Interview, 39, 50 Jacobi, Maria, 117–118, 122 Kolker, Eliza, 90 Kovit, Leonard, 158 Labor and delivery, 34–35, Laser surgery (photocoagulation) description of, 19, 21, 26, 32, 164–165 intention, 89, 123, 217 parental experience, 128, 204
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Lawrence, Helena, 100 Layne, Linda, 47, 187, 190, 194, 221 Leung, Patricia, 128 Ligation compared to abortion, 94 compared to life support, 92 description, 23, 89–90, 165 doctrine of double effect (see Doctrine of Double Effect) parental consent, 36, 89–90, 92, 130, 162, 205 potential trauma to surviving twin, 170–171 MacDonald, Maggie, 77–78 MacGregor, Moira, 119–120, 122, 125 Marble, Barbara, 126–127 Marble, Jean, 130–131 Martinez, Marc, 21, 57, 69, 113, 153, 214–216, 222 Materializing, 76 Maternal blame and guilt, 76, 98–104. See also Blame accomplice to fetal death, 152, 173 attempting to minimize, 210–211, 222 resulting from ligation, 91, 173 resulting from pregnancy loss, 47–48, 187 risk of, 108, 206–207, 213 Maternal-fetal conflict, 45–46, 221 Mathews, Claire, 119 May, Tina, 100, 192–194, 209 Media coverage, 217 Medicaid, 218 Meyers, Linda, 142–143 Minimally invasive procedure, 42, 151, 157 Miracle babies, 75, 220 from God, 148 of medicine, 62, 184 Montana, Yolanda, 96 Morales, W. J., 149
252
Index
Munson, Ronald, 89 Multiple Births Foundation, 190 Nates, Abby and Brett, 166–167, 195, 205–206 New frontier, 41, 63 National Organization for Rare Disorders, Inc. (NORD), 79 O’Brien, Margaret, 92, 168, 170–171, 204–205, 220 Objectivity, 54, 58–59 Open fetal surgery, 44, 221 as women’s health issue, 67, 73, 76 Orphan disease, 79, 154 Palatine, Annette, 81 Patient-mother, 49, 71, 127–134 Patient packet, 26–27, 110, Patient-parent, 49 Perfect baby, 47, 187, 207–208 nonperfect, 84 Peterson, Wayne, 114–115 Placenta, 19, 21, 32, 133 Perinatologist, 15–16 Prayer, 29–30, 67, 97, 194, 220 chain, 93 Pregnancy loss, 47–48, 98, 150–151, 171–172, 187–213, 219–221 accepting reality of, 191, 202 taboo and silence, 189–190, 217 Pro-choice, 45 Production model of reproduction, 48, 98–99, 158, 217 Pro-life, 44, 66, 87, 91, 105, 209 Quintero, Rubén, 139–140, 146, 217 Rapp, Rayna, 64, 73, 197, 212, 221 Rare medicine. See Boutique medicine Redding, Emily and Peter, 167–168, 200–201 Reece, E., Albert, 43, 139, 141 Referring physician, 129–133, 143, 206, 208, 216 Reinharz, Shulamit, 60
Religious attitudes, 76 Catholic, 87–98 Resting place, 188, 194–197 Risk, 108–112, 112–128, 154 emotional or psychological, 43, 109–110 medical 19–20, 29, 42–43, 108, 131, 147–150 Royal, Winnie, 129 Science and Technology Studies, 155, 221–222 Scientism, 46–47, 83, 95 Serial amniocentesis, 18 Social services, 111, 174–175 Stockton, Collette, 99, 206–207 Studying up, 68 Subject/object vacillation. See Acardius Success, 32, 203–213, 217 health of babies, 206 no living babies, 208 number of babies, 206 Surbek, D.V., 141–142 Taylor, Janelle, 199 Technological fix, 83, 149–155 Technology stabilization, 117 Tentative pregnancy, 184 Termination, 18, 147, 200, 216. See also Abortion Tippens, Janice, 172–173, 196–197 Twins. See also Acardiac twinning; TTTS definitions, 163–165 naming conventions, 168–169 relationships, 159–161, 168, 171, 177, 179–184, 200 twin bond, 167–169, 171, 182 Twin-to-twin transfusion syndrome. See TTTS TTTS description, 10, 16, 159, 164 fetoscopy as treatment, 164–165 ligation as treatment, 166–172
Index medical provider views, 101, 130–132 metaphor, 95–96 parental decision-making, 128–129 potential outcomes, 85–86, 207–208, 217 scientific reasoning, 95–96 viewing surgery, 81 viewing ultrasound, 199–201 Ultrasound bedside, 35 compared to fetoscopy, 42–43, 138, 140 during surgery, 31 follow-up, 38, 70, 82, 199–203 see or visit fetus, 77, 199, 203 prenatal paradox, 199, 210 visual confirmation of illness, 14–16, 18, 24, 146–147 University Hospital, 51, 135 Video, 32, 78 Wainwrite, Sarah, 176, 208–209 White, Deanna, 128, 144–146, 206–207 Wishful image, 48, 105
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