Management of Cleft Lip and Palate in the Developing World

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Management of Cleft Lip and Palate in the Developing World Edited by

MICHAEL MARS Great Ormond Street Hospital NHS Trust, London

DEBBIE SELL Great Ormond Street Hospital NHS Trust, London

ALEX HABEL Great Ormond Street Hospital NHS Trust, London

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Management of Cleft Lip and Palate in the Developing World

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Management of Cleft Lip and Palate in the Developing World Edited by

MICHAEL MARS Great Ormond Street Hospital NHS Trust, London

DEBBIE SELL Great Ormond Street Hospital NHS Trust, London

ALEX HABEL Great Ormond Street Hospital NHS Trust, London

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C 2008 Copyright 

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John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex PO19 8SQ, England Telephone (+44) 1243 779777

Email (for orders and customer service enquiries): [email protected] Visit our Home Page on www.wiley.com All Rights Reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning or otherwise, except under the terms of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London W1T 4LP, UK, without the permission in writing of the Publisher. Requests to the Publisher should be addressed to the Permissions Department, John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex PO19 8SQ, England, or emailed to [email protected], or faxed to (+44) 1243 770620. Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The Publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the Publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. Other Wiley Editorial Offices John Wiley & Sons Inc., 111 River Street, Hoboken, NJ 07030, USA Jossey-Bass, 989 Market Street, San Francisco, CA 94103-1741, USA Wiley-VCH Verlag GmbH, Boschstr. 12, D-69469 Weinheim, Germany John Wiley & Sons Australia Ltd, 42 McDougall Street, Milton, Queensland 4064, Australia John Wiley & Sons (Asia) Pte Ltd, 2 Clementi Loop #02-01, Jin Xing Distripark, Singapore 129809 John Wiley & Sons Canada Ltd, 6045 Freemont Blvd, Mississauga, ONT, L5R 4J3, Canada Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books. Library of Congress Cataloging-in-Publication Data Management of cleft lip and palate in the developing world/edited by Michael Mars, Debbie Sell, and Alex Habel. p. ; cm. Includes bibliographical references and index. ISBN 978-0-470-01968-9 (pbk. : alk. paper) 1. Cleft lip–Developing countries. 2. Cleft palate–Developing countries. I. Mars, Michael. II. Sell, D. A (Debbie A.) III. Habel, Alex. [DNLM: 1. Cleft Lip–surgery. 2. Cleft palate–surgery. 3. Child. 4. Cleft Lip–rehabilitation. 5. Cleft Palate–rehabilitation. 6. Developing Countries. 7. Medical Missions, Official. WV 440 M2665 2008] RD524.M288 2008 617.5 225091724–dc22 2007035540 British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library ISBN 9780470019689 Typeset in 10/12 pt Times by Aptara Inc, New Delhi, India Printed and bound in Great Britain by insert This book is printed on acid-free paper responsibly manufactured from sustainable forestry in which at least two trees are planted for each one used for paper production.

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Contents

List of Contributors vii Foreword xi Introduction 1 Michael Mars, Debbie Sell and Alex Habel Part I

SURGERY AND ANAESTHESIA

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Exporting Plastic Surgical Care to Developing Countries Evan S. Garfein, Jacqueline Hom and John B. Mulliken

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So You Want to Help in a Less Developed Country? Bruce Richard

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Challenges for Cleft Care in the Developing and the Developed World Brian Sommerlad

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Cleft Lip and Palate Management in the Developing World: Primary and Secondary Surgery and Its Delivery 37 James Lehman

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Anaesthesia for Cleft Lip and Palate Surgery in the Developing World Sarah Hodges and Isabeau Walker

Part II

APPROACHES TO ORGANIZATION

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Operation Smile 59 Bill Magee

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Rotaplast International: A Study in Medical Volunteerism Angelo Capozzi

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Logistics and Nursing Issues Priscilla Jurkovich

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CONTENTS

The Sri Lankan Cleft Lip and Palate Project 95 Sanath P. Lamabadusuriya and Michael Mars

Part III 10

FACIAL GROWTH RESEARCH

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Facial Growth in Cleft Lip and Palate Subjects Michael Mars

Part IV

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MEDICAL MANAGEMENT, DISABILITY, PSYCHOLOGICAL AND SOCIAL ASPECTS

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Paediatric Care in Developing Countries: An Integrated (Holistic) Approach 127 Albert C. Goldberg and Alex Habel

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Disability, Culture and Cleft Lip and Palate Mary Wickenden

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Psychological and Social Aspects of CL/P in the Developing World, Including Implications of Late Surgery or No Surgery 159 Eileen Bradbury and Alex Habel

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The Background, Establishment and Function of a Parents/Patients Support Group in Sri Lanka 173 Parakrama Wijekoon

Part V

SPEECH AND AUDIOLOGY

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Speech in the Unoperated or Late Operated Cleft Lip and Palate Patient 179 Debbie Sell

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Speech Therapy Delivery and Cleft Lip and Palate in the Developing World 193 Debbie Sell

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ENT and Audiology Care for Cleft Palate Patients in the Developing World 203 Tony Sirimanna

Index

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Eileen Bradbury is a consultant psychologist, Associate Fellow of the British Psychological Society and Honorary Senior Clinical Lecturer at the University of London School of Medicine and Dentistry. She has worked for many years with plastic surgeons and in cleft units in the UK, developing approaches to the psychological care of children, adolescents and adults with clefts. In Uganda, in 2002, she collaborated with a surgical team developing ways of assessing individuals prior to cleft repair and measuring psychological and social outcomes. Angelo Capozzi is a plastic surgeon. He was in private practice for 30 years in San Francisco. In 1998, he left private practice and became the Chief of Plastic Surgery at the Shrine Hospital for Children in Sacramento, California. Dr Capozzi has been involved in international service since 1976 and co-founded Rotaplast International Inc. in 1992. In 30 years of international service, he and his colleagues have worked in 16 different countries in South and Central America, as well as China, Vietnam, India, Ethiopia, Romania and the Philippines. Since the first mission in 1993, Rotaplast has operated on over 10,000 children and young adults. Nigel Crisp was Chief Executive of the NHS and Permanent Secretary of the Department of Health from 2000 to 2006. He is leading the international task force on scaling up the training and education of health workers in Developing Countries as a consultant with the Gates Foundation. He published a report for the Prime Minister in February 2007, Global Health Partnerships: The UK Contribution to Health in Developing Countries. He became a member of the House of Lords in 2006. Evan S. Garfein is a Microsurgery and Reconstructive Surgery Fellow at New York University’s Institute for Reconstructive Plastic Surgery. He has worked in Cange, Haiti, as a consultant for Partners in Health, a Boston-based group dedicated to providing comprehensive health-care solutions for the Developing World. Albert C. Goldberg is a paediatrician in private practice with San Rafael Pediatrics in San Rafael, California. For the past 25 years, he has worked in countries such as Argentina, Bolivia, Chile, China, Ecuador, Ethiopia, Honduras, India, Mexico, Venezuela and Vietnam. He is the Director of Pediatrics with Rotaplast International Inc. Alex Habel is consultant paediatrician to the North Thames Regional Cleft Unit based at Great Ormond Street Hospital NHS Trust, London. He has been involved with multidisciplinary cleft teams in Sri Lanka, the Maldives and Venezuela and is

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working in partnership with local medical and dental professionals researching into children’s growth in Sri Lanka and cleft-related genetic conditions in China. Sarah Hodges is an anaesthesiologist in the Children’s Orthopaedic Rehabilitation unit in Kampala. She started her training in anaesthesia in 1990 in the UK before moving to Uganda to work in a rural hospital in the west of Uganda run by the Church. She was involved in training nurses, interns and anaesthetic officers. She and her husband ran a mobile project for over eight months, repairing cleft lips and palates throughout Uganda in 1997–98. She returned to the UK in 1998, to upgrade her training in anaesthesia where she obtained her FRCA. She has now returned to Uganda with her husband where they are both involved in training. Although based in Kampala, they travel around the country doing a variety of reconstructive surgery but especially cleft lip and palate surgery. She also teaches anaesthetic officers and the postgraduate trainees in anaesthesia at Mulago Hospital in Kampala and up country. Jacqueline Hom is a dental student and Presidential Scholar at Harvard School of Dental Medicine, USA. She completed her DMD thesis on the role of traditional Chinese health beliefs on oral health in Beijing, China. In 2007, Jacqueline interned at The Smile Train, United Nations Development Fund for Women (UNIFEM), and the World Health Organization (WHO). Recently, Jacqueline was selected as a Fogarty/ Ellison Global Health and Clinical Research Fellow to research oral manifestations of HIV/AIDS at the GHESKIO Center in Port-au-Prince, Haiti. Priscilla Jurkovich is a clinical nurse educator at Sanford Health in Sioux Falls, South Dakota, USA. She has been involved as the nursing coordinator or a staff registered nurse on surgical mission trips since 1993. Recently, Priscilla has been involved with cleft lip and palate repairs with Rotaplast and Alliance for Smiles in China, Chile, Romania, Colombia and Bolivia. Sanath P. Lamabadusuriya is the Senior Professor of Paediatrics and Chair of the Faculty of Medicine, University of Colombo, Sri Lanka. He is a former Dean of the same faculty. He is also a consultant paediatrician at the Lady Ridgeway Hospital for Children in Colombo. He has been the Co-Director of the Sri Lankan Cleft Lip and Palate Project since its inception when he was the founder Professor of Paediatrics at the University of Ruhuna in Galle. He has over 120 scientific publications to his credit. Jim Lehman is a plastic surgeon in Dacron, Ohio, and an ex-President of the American Craniofacial Cleft Lip and Palate Association. He has worked for many years with Rotaplast teams in South America. Bill Magee founded Operation Smile in 1982, and serves as the organization’s Chief Executive Officer. Dr Magee was awarded the Hays-Fulbright Scholar Grant from the Franco-American Commission where he studied in France with Dr Paul Tessier. He is Director of the Institute for Craniofacial and Plastic Surgery in the Children’s Hospital of The King’s Daughters, Norfolk, VA, and Chair of the Plastic Surgery Department. In addition, Dr Magee is Associate Professor of Plastic Surgery at Eastern Virginia

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Medical School and Professor in the Department of Plastic Surgery at the University of Southern California. Michael Mars is lead consultant orthodontist at the North Thames Regional Cleft Unit, based at Great Ormond Street Hospital NHS Trust, London. In 1984, he founded and continues to direct the Sri Lankan Cleft Lip and Palate Project. He was a joint founder of the first Sri Lankan Speech and Language Therapy training course at the University of Kelaniya, Colombo. He co-founded CLAPA (the Cleft Lip and Palate Association – a UK registered charity) in 1979, and served as its Chairman until 2005. He has worked in multidisciplinary teams in India, the Maldives, and Russia, as well as Sri Lanka. His major research interest is in all aspects of facial growth in cleft lip and palate: its measurement, assessment in cross-centre studies, and the effects of the nature and timing of surgery on the outcome of facial morphology. He has been awarded an honorary D.Sc from Ruhuna University, Sri Lanka, is a visiting professor at the Faculty of Medicine, Peradeniya, and has recently been made an honorary Fellow of the Sri Lankan College of Paediatricians. John B. Mulliken is Director of the Craniofacial Center, Children’s Hospital Boston, and Professor of Surgery at Harvard Medical School. He has written on surgical repair of cleft lip/palate, lectured in England, Italy, Chile, Korea and Taiwan, and worked in Guayaquil and Quito, Ecuador. Bruce Richard is a consultant plastic surgeon in Birmingham, UK, with a 70% primary cleft surgery commitment. He worked as a plastic surgeon, seconded to the Government of Nepal by a Christian aid organization, in a Nepalese government hospital with Nepali colleagues for nine years. He helped establish a regional plastic and burns unit, and trained seven national surgeons. He performed 473 cleft operations, and participated in the development of individual and family support for those with cleft and other congenital abnormalities. He facilitated the creation of a speech and language therapy service for the western half of Nepal, a database for clefts with a research officer, and completed a randomized controlled trial. After returning to the UK, in 2005, he was part of Operation Smile’s inaugural trip to Ethiopia. Debbie Sell is Head of the Speech and Language Therapy Department at Great Ormond Street Hospital NHS Trust, and Lead Speech and Language Therapist, North Thames Regional Cleft Service. She was responsible for the speech and language therapy component of the Sri Lankan Cleft Lip and Palate Project, involving research, treatment and counterpart training. Her PhD was a study of speech outcomes in the unoperated and late operated patient. She was a joint founder of the first Sri Lankan Speech and Language Therapy training course at the University of Kelaniya, Colombo. She has also been involved in projects in China, Russia, the Maldives, and Mount Abu Rajastan. Tony Sirimanna is a consultant audiological physician and the lead clinician for audiology and audiological medicine at Great Ormond Street Hospital NHS Trust, London, where he has worked since 1995. He is a graduate of Colombo Medical

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Faculty and worked as a consultant ENT surgeon in Sri Lanka before becoming an audiological physician. He has been involved with developing audiology services in Sri Lanka over the past decade and also has been a member of the Sri Lankan Cleft Lip and Palate Project. He is a member of the International Association of Audiological Physicians and the International Society of Audiology and has close working relationships with audiologists in a large number of Developing Countries. Brian Sommerlad is consultant plastic surgeon at Great Ormond Street Hospital NHS Trust, London, and ex-Director of the North Thames Regional Cleft Unit. He is on the Medical Advisory Board of Smile Train, and regularly works with surgical teams in Bangladesh, Sri Lanka and Uganda. He is a frequent guest speaker at meetings in India and was the Millard Lecturer at the Indian Cleft Lip and Palate Society meeting in February 2007. Isabeau Walker is consultant anaesthetist at Great Ormond Street Hospital NHS Trust, London. She has worked in Sri Lanka and Uganda. Mary Wickenden teaches on disability and development in the Centre for International Health and Development at University College London. She trained and worked as a speech and language therapist and lectured on undergraduate SLT programmes in the UK. She developed an interest in culture and disability and the ways in which disability services evolve in development settings. She coordinated and taught on the innovative SLT training programme at the University of Kelaniya, Sri Lanka. She has also undertaken teaching and research projects related to disability in India, Uganda, Iran and Bangladesh. She is currently undertaking a PhD in the anthropology of disability at the University of Sheffield. Parakrama Wijekoon is consultant maxillofacial surgeon and currently Head of the Oral and Maxillofacial Surgery Department at the Faculty of Dental Sciences, University of Peradeniya, Sri Lanka. He specializes in cleft lip and palate surgery and is mainly involved with primary surgery. He was the founder of the parent association of Sri Lankan Cleft Lip and Palate Patients, Sanyathya.

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Foreword

This book is about making a difference to people’s lives. It is about dealing with treatable conditions which blight the lives of many millions. While a cleft lip and palate is rarely life-threatening, it causes facial disfigurement (especially if untreated), damages the ability to communicate, and consequentially limits the opportunity for education, employment and the development of relationships. It diminishes the potential of the individual and of the society. In many ways, this is a story of the passion and commitment of individuals who use their skills voluntarily to provide treatment and care, and of the organizations, many of them NGOs, which are making this work possible. But it is also a very practical account of what is being done and what can be done. It reviews and critiques current approaches and draws out the particular issues that need to be addressed in the environments of Developing Countries – which differ so markedly from each other as well as from the Developed Countries where most of the authors live. Moreover, the editors in their Introduction face up to the most difficult social and ethical questions – about cultural differences, about how you can or cannot apply different standards in different countries, about how even the best intended efforts can harm as well as improve, about motivations and about sustainability. They also describe the dilemmas over how much effort should be put into training local people, as opposed to treating local patients. Internationally, there is increasing agreement on the need to help ‘build capacity’ in Developing Countries. This not only means a strong focus on training as well as treatment, but it also requires the development of local health systems alongside specific initiatives such as those on HIV/AIDS, maternal care and, of course, the management of cleft lip and palate. Many of these initiatives currently operate in isolation and are not linked to local priorities and systems. This, in turn, means that donors and Developed Countries need to switch the emphasis from deciding what needs to be done and doing it for people in Developing Countries, to supporting them in doing what they themselves decide needs to be done. Ultimately, leadership is local.

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FOREWORD

This important book brings together current knowledge and ideas. It offers the insights and experiences of many authors from different countries and different disciplines. It shows that a great deal is being done to improve the lives of people who suffer from cleft lip and palate – and provides a valuable platform for doing even more in the future. Nigel Crisp Honorary Professor, London School of Hygiene and Tropical Medicine, Senior Fellow, Institute for Healthcare Improvement; Member of the House of Lords

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Introduction MICHAEL MARS, DEBBIE SELL AND ALEX HABEL

Every year almost a quarter of a million new babies with cleft lip and/or palate are born in the poorest parts of the world where resources are severely limited, scarce or non-existent. Just 17,000 are born every year in the richer world. The majority born in the poorer countries receive very limited or no treatment at all. To add to this burden, it should be stated that this occurs on a cumulative annual basis, resulting in a reservoir of many millions of under-treated and untreated individuals. In India and China alone, this may result in 2.5 million cleft lip and palate subjects for each country over a period of 50 years, assuming this is the minimum average life expectancy. It is estimated that 154 million new babies are born worldwide annually. Of these, 144 million births occur in the so-called Developing or Least Developed World, and just 10 million in the industrial or Developed World. These statistics need to be placed in the context of overall global health care. But, first, the concept of the ‘Developing World’ needs some explanation. The allocation of countries to either the Developing or Developed World is based on data for infant mortality rates. One in 10 children in South Asia dies before their fifth birthday and in Sub-Saharan Africa 175 per thousand children die before they are five years old, compared to six per thousand in industrialized countries. Some 10.8 million children die each year, most from preventable causes, and almost all in poor countries – 30,000 children die each day, one child every three seconds! (Black et al., 2003). Under-nutrition is important as an underlying cause of child death. It is often associated with infectious diseases, multiple concurrent illnesses, pneumonia and diarrhoea, which remain the diseases most associated with child deaths. All the above naturally raises the question, ‘Should we be concerned about cleft lip and palate?’ In the overall picture of global health-care provision, does cleft lip and palate matter? It is rarely life-threatening and, indeed, some consider it to be merely a cosmetic problem. Throughout this book the terms Developed and Developing Countries/World will be used. The terminology used by the Developed World for the Developing World is itself confusing: ‘The Poorest Countries’, ‘the Under-developed World’, ‘the Nonindustrialized Countries’, ‘the Southern Hemisphere’, ‘the Majority World’, ‘the Third World’, ‘Less Economically Developed Countries’ are just some of the labels used to attempt to gain some understanding of the issues involved. Many of these

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Developing Countries consider these terms patronizing and dismissive, perhaps with some justification. For example, modern surgery in the West is considered to have been developed by Hunter just 200 years ago, whereas Sushruta in India wrote texts on surgery, infection control and the use of silk sutures over 2500 years ago. Nevertheless, it is clear that some countries are disproportionately rich and others poor and this at least provides a good starting point for evaluation of an investigation of how the two might share finite resources. The question is further compounded by a common misconception that the Developing World is uniform. Africa, for example, is often referred to as though it were a single country. Neighbouring countries are often grouped together, for example, India and Sri Lanka are both parts of South-East Asia but there are important health-care, social, educational and economic differences. Life expectancy for females in India is 63.4 years compared to 75.4 years in Sri Lanka and 79.9 years in the UK. Under-five mortality in India per thousand is 95 compared to 22.6 in Sri Lanka and 6.5 in the UK. These figures are worse for Sub-Saharan Africa where under-five mortality in some countries is 200 per thousand. Given that so many programmes of care from the Developed World to the Developing World for cleft lip and palate are undertaken by a variety of individuals and organizations, it is clear that at least in the former, cleft lip and palate is accorded some degree of priority for remedial care. A further question now arises: should those in rich countries determine the health-care priorities for poor countries where perhaps the more pressing needs of basic survival pertain? Should they be able to impose their systems of care by virtue of their wealth? In extreme circumstances, does the quality of life have a value when life itself is so frequently challenged? Clinicians and politicians in Developing Countries are increasingly recognizing that the large reservoirs of untreated cleft lip and palate cases in their populations are actually a drain on their economic well-being and a blight on the lives of millions of people. At the basic level of surgical care alone, the cost of repair is small, requiring little in the way of sophisticated technological equipment. Those treated may become accepted members of society, marry, gain an education and employment and attain their full social and economic potential which is denied to those who do not have access to treatment. That both the Developed World and the Developing World are concerned is demonstrated by the large number of collaborative programmes of care presently being undertaken. These programmes in themselves raise many more questions, often more than they can answer. How can we make an ethical significant and sustainable difference? These so-called (and in our view, inappropriately called) cleft lip and palate ‘missions’, which have become a feature of the provision of care from the rich to the poor, are the object of both praise and derision (Mulliken, 2004). Many emphasize ‘head counts’ – the number of clefts per trip. In an attempt to bring ‘healing’ for a variety of congenital and acquired conditions, organizations such as ‘Mercy Ships’ provide surgery performed by non-specialist teams. These are prepared to take on many relatively low-risk procedures but may lack the essential skills to produce an improvement in life experience resulting from poorly performed surgery. There is often little effort

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INTRODUCTION

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to involve local surgeons who are left to manage post-operative problems once the visitors have departed. Many teams provide no continuity of care, without offering help in speech, dental care, orthodontics or secondary surgical procedures (Mulliken, 2004). Some teams are politically or religiously motivated, often a cause of concern within the host country. Some take no responsibility for convalescence and the clinicians involved are often very junior with no experience in their own countries of cleft lip and palate work (Natsume, 1998). Visiting surgeons have sometimes used these missions to train their junior staff, and the safety standards have not always been those that are required in their home countries (Dupuis, 2004). Deaths have been reported in which full postmortem investigations would have taken place in the Developed World. ‘Surgical safaris’ and ‘Parachute programmes’ have been the terms used by critics of such visits. Many have argued that the benefits have often been for the visitors rather than the visited. On the other hand, many programmes of care are truly based on the aims of treatment, teaching and training, leading to the goal of self-sustaining care by the host countries. There is a dearth of research into what treatment practices actually work best in the Developing World. The simple export of the same policies of care as provided in the wealthier countries may fail to deliver equivalent results in the Developing World. Where there are no local facilities whatsoever, the goals and aspirations of visiting teams will need to reflect this. Speech therapy and orthodontic provision is often absent even if basic surgery is possible. Palate surgery for older patients may often provide no help for speech and be a misplaced use of precious resources. The Developed World continues to export and promote treatments (Grayson et al., 1999), the benefits of which are questioned, even in their own countries. Non-governmental organizations (NGOs) are significant contributors to the provision of health care, especially in the poorest countries in the Developing World. However, despite their financial power, which some governments may interpret as being politically motivated or religiously slanted, they also compete for available local resources. Clearly, there are many questions and fewer answers to the problems that beset the provision of cleft lip and palate treatment in the Developing World. This book attempts to address these questions. All the contributors have considerable experience in their own countries and in the Developing World. They do not always agree. There is no ‘right answer’. The conditions differ from one country to another and within any one country. Many, including the editors, will admit to having made mistakes in their approach to cleft care in their efforts in the Developing World. They have been guilty of ethnocentricity, patronizing and of being non-cost-effective. They try, but because of cultural misunderstandings even when motivated by the best intentions, they can so easily fail. The question above all still remains ‘whether we have the will to do what needs to be done’ (Lancet, 2003). With goodwill and understanding between the Developing and the Developed World it should be possible to work towards eliminating the scourge of untreated cleft lip and palate from the world. This multiauthor and multidisciplinary book tries to move towards that goal. The management of cleft lip and palate in the Developing World is and will continue to be a challenge

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for both rich and poor countries. With mutual understanding this challenge presents great opportunities for both worlds.

REFERENCES Black RE, Morris SS & Bryce J (2003) ‘Where and why are 10 million children dying every year?’ Lancet 361: 2226–34. Dupuis CC (2004) ‘Humanitarian missions in the Third World: a polite dissent’, Plast Reconstr Surg 113: 433–5. Grayson BH, Santiago PE, Brecht LE & Cutting CB (1999) ‘Presurgical nasoalveolar moulding in infants with cleft lip and palate’, Cleft Pal Craniofac J 36: 486–98. Lancet (2003) ‘Editorial: the world’s forgotten children’, Lancet 361: 1. Mulliken JB (2004) ‘The changing faces of children with cleft lip and palate’, New Engl J Med 351: 745. Natsume N (1998) ‘Safari surgery’, Plast Reconstr Surg 102: 1304–5.

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Surgery and Anaesthesia

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Exporting Plastic Surgical Care to Developing Countries EVAN S. GARFEIN, JACQUELINE HOM AND JOHN B. MULLIKEN

Editorial comment: This chapter is a thought-provoking essay addressing for whom, why, when, where and how plastic surgical support from the Developed to the Developing World should be organized. It limits itself to a surgical review, but nevertheless raises issues that are pertinent to the whole multidisciplinary team.

INTRODUCTION The word ‘surgery’ – from the Greek words cheir, hand, and ergon, work – denotes a branch of medicine that treats disease using the hands. Power is given to those who have the ability to correct deformity and excise disease. For the physician who practices the surgical art, operating is not only the primary therapeutic method, it is also a mindset. This operative inclination and ability have spurred surgeons to go on ‘missions’ to other countries where obvious congenital and acquired deformities often go unoperated. Surgical correction is usually relatively uncomplicated. Groups and individuals travel with different motivations to locales with widely disparate medical capabilities. In this chapter, we evaluate the ‘rules of engagement’ for these humanitarian activities in overseas plastic surgery and discuss the reasons why a single model does not apply in all circumstances. There are several explanations why congenital and acquired deformities are not treated in resource-poor countries. Economic reasons are foremost, i.e., the lack of financial resources in the country’s public health system and often minimal or no payment to surgeons who treat underprivileged patients (Mulliken, 2004). Technological limitations include a lack of modern surgical equipment and operating facilities. There may be no trained surgeons. There are also cultural reasons such as unequal access to surgical care by fringe or minority groups. Government policies may reinforce the economic and the cultural imbalance within a country or minimize the importance of surgical care versus medical care (Mulliken, 2004). Prioritization of resources varies

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from country to country. Repairing congenital anomalies in a small section of the population is often low on the list of priorities. Whatever the cause, or combination of causes, many Developing Countries do not have the resources or infrastructure to provide surgical care for the majority of their population. A stop-gap solution, which has continued to spark debate, is the exportation of surgical care from Developed to Developing Countries. We discuss the different settings that attract surgical teams, past models of exporting care to Developing Countries, and propose new guidelines for future endeavors abroad. We focus on plastic surgery because it is the area with which we are most familiar. Nevertheless, the problems and principles apply to all surgical specialties, and indeed other professional groups.

THE DESTINATION Surgeons, in general, and plastic surgeons, in particular, have a long history of traveling abroad to operate on congenital and acquired deformities in patients who have no access to care. Inherent in this process is a transfer of resources – intellectual, technological, financial, material and psychological. As exportation of surgical care has evolved, so too have the various locations that attract these types of visits. Not all ‘missions’ arrive in the same setting and address a single type of problem with the same resource requirements. Thus, it is inappropriate to set up a standard core of guidelines or principles to govern the conduct of all groups in all places. Nonetheless, there are tenets that apply to all such humanitarian efforts. Some individuals and groups go to remote villages with no access to Developed World medical care. Notwithstanding the multiple medical problems in such places, usually the team’s ability to treat complex or involved surgical conditions is limited. Patients in small towns have access to care by traveling to cities, but usually without the benefit of specialists to treat anomalies like cleft lip/palate. There are cities in Developing Countries where modern but under-staffed, under-supplied hospitals exist. In these urban settings, the public health system is often unable to provide plastic surgical services to the country’s poor.

MODELS OF DELIVERING CARE OVERSEAS Over the past 30 years, plastic surgical care has been transported from Developed to Developing Countries in many ways. The models span a wide range of preparation, organization and sustainability. At one end of the spectrum is the lone surgeon who travels abroad with donated instruments and supplies, and is self-supported. The surgeon performs operations on the patients he feels qualified to help and in the best operative setting available. In the mid-spectrum are the small surgical groups that try to foster long-term relationships with medical communities abroad and make an effort to return to the same resource-poor locale on a regular basis. Further along

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the spectrum are the highly organized and well-financed philanthropic organizations that sponsor large-scale trips. With increased participation of the local medical and surgical community, their efforts may lead to the development of enduring, homegrown care. Some groups assist well-financed, local hospitals and organizations to improve infrastructure and promote a higher level of health-care delivery. At the far end of the ‘missionary’ spectrum are the few established organizations whose goals are to build infrastructure, train personnel, and develop a self-supporting care system, which might also include research, training surgeons, and assisting other centers in need of help. ONE AUTHOR’S EXPERIENCE One author (ESG) has observed the impact of a medical program in the Caribbean. In 2005, he traveled to rural Haiti to assist the full-time general surgeons at Zanmi Lasante, the Haitian arm of the Boston-based organization, Partners in Health. This organization was founded in the mid-1980s by Dr. Paul Farmer, an infectious disease specialist. His original goal was to treat endemic tuberculosis and HIV infection that were ravaging the Plateau Centrale of Haiti. As the clinic grew in size and resources, surgical care came to be recognized as a necessity. The surgical program in Cange, where Zanmi Lasante is based, has expanded considerably over the past decade. Large-scale capital investments for two operating rooms, a surgical ward, anesthetic machines, and assorted equipment were given as resources allowed. The present complement of staff surgeons permits the treatment of most urgent and emergent problems. Nonetheless, specialty care, such as plastic surgery, urology, thoracic surgery, neurosurgery, remains beyond the scope of these talented and dedicated surgeons. Zanmi Lasante has dealt with this deficiency in the usual way. They appealed to foreign groups to donate time and resources for the care of Haitian patients. Plastic surgeons from Miami and neurosurgeons from South Carolina have made several trips. A personal appeal by Dr. Farmer convinced the author to participate. The challenges faced on the Plateau Centrale were typical of many rural hospital settings. Resources were scarce, equipment was of poor quality, and the patients often presented with advanced or complex pathologic conditions. Often there was the temptation to try to do more than was prudent. The importance of responsible patient care in this setting has been underscored in the literature and is addressed elsewhere in this chapter. The major challenge that faces the surgeon after returning home is how the accomplishments during the brief sojourn can be amplified. Delivery of surgical care in the Developing World ideally requires all the elements with which we, in the Developed World, are familiar. Safe and effective operations require doctors, nurses, ancillary staff, equipment, medications, instruments, information systems and records, and buildings. One way is to establish a large, centrally administered non-governmental organization, such as The Smile Train or Operation Smile. Another is to build a ‘grass-roots’ organization, obtaining excess inventory

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from one’s hospital, recruiting volunteers from colleagues, and obtaining donations from sympathetic sources. In our experience, very good intentions are often expressed during the visit without always an understanding of the time commitment required to maintain or build the program in the Developing Country, once back home with all the day-to-day pressures, obligations and interests there. The effort required to establish and support a surgical program from abroad is considerable, and requires vast amounts of discipline and dedication. Surgeons must be disciplined to operate responsibly and within the limitations of training and resources. They must be dedicated to the cause which they have chosen, whatever the constraints of distance and time.

LARGE ORGANIZATIONS Of the many organizations that export surgical care to Developing Countries, a few have garnered massive logistical support, powerful public relations apparatus, and impressive fund-raising machinery. Moreover, each succession of these large-scale organizations learns from the successes and failures of its predecessors. Three of these organizations are highlighted to illustrate this evolution in exportation of surgical care to Developing Countries: Interplast, Operation Smile and The Smile Train. INTERPLAST Interplast (www.interplast.org) was founded in 1969 by Dr. Donald Laub, while he was Chief of Plastic Surgery at Stanford University. According to its mission statement, Interplast’s three goals are: (1) to perform reconstructive surgery; (2) to teach local surgeons the skills of reconstruction; (3) to assist local surgeons on the road to independent function. Today, Interplast organizes approximately twenty trips per year to various locations around the world. Each expedition involves a 12–15-person team, including surgeons, anesthesiologists, pediatricians, nurses, technicians, therapists, and coordinators. As part of its goal to educate local doctors, Interplast also sponsors fellowships for foreign surgeons to train at centers of excellence in the United States. OPERATION SMILE Operation Smile (www.operationsmile.org) was founded in 1982 by Dr. William Magee, Jr, a plastic surgeon in Norfolk, Virginia, specifically to treat cleft lip and palate. Surgeons operating under the auspices of Operation Smile have cared for over 100,000 children in Developing Countries. Operation Smile also helps surgeons in Developing Countries through in-country fellowships and through sponsorship of plastic and reconstructive surgical training for foreign surgeons in the United States. According to the Operation Smile website, 86% of cash and in-kind donations go directly to patient care.

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In 1999, there was a widely publicized report in the New York Times that highlighted the deaths of several children undergoing operations during Operation Smile visits to Developing Countries (Abelson & Rosenthal, 1999). These and other complications led to the criticism that many surgical ‘missionary’ organizations had inadequate safeguards, poor quality assurance mechanisms, and operational philosophies that emphasized the number of procedures over both safety and quality (‘head count’). This negative publicity and the philosophical issues led to changes in Operation Smile’s organization. Processes for safer procedures have evolved. Surgery is a discipline, a branch of medicine, not an act. Operation Smile’s visits have developed to reflect the increasing importance of teaching the local surgeons advanced techniques in order to lessen the reliance on visiting teams. THE SMILE TRAIN The Smile Train (www.thesmiletrain.org) has taken a different tack from Operation Smile. The operational style of The Smile Train emphasizes lean, cost-conscious, and low-overhead procedures; 100% of donations go directly to patient care. The Smile Train began operations in 1999 based on the age-old concept of ‘teach a man to fish’. Instead of sending teams of American doctors on overseas visits, The Smile Train manages cleft lip and palate by upgrading local infrastructure. The Smile Train provides free education, equipment and financial support to hospitals, organizations and medical professionals through partnerships, educational, research and training grants. The organization’s emphasis on teaching local surgeons how to safely and effectively perform certain procedures is also illustrated by the development of a virtual surgery training CD and the internet-based patient record system, The Smile Train Express (http://www.smiletrainexpress.org). All operations supported by The Smile Train are recorded on The Smile Train Express, and the outcomes of cleft lip repair undergo regular quality assurance reviews by a medical advisory board, based on photographs. The first response to surgeons with poor reviews is to provide opportunities for further training and education. Since March 2000, The Smile Train has treated over 230,000 children with cleft lip and palate (website, 28 June 2007). Recently, The Smile Train has introduced a change of policy by having surgeons visiting the Developing World from the Developed World. In a mass-mailing campaign in early 2007, the organization introduced The Smile Train Medical Exchange Program, the aim of which is to recruit volunteer surgeons to travel abroad to perform cleft lip repair. The proposed benefits of this new program include the ability of the surgeon to choose dates, location, team members, and length of trip. Financial support is included. These volunteers are required to enter patients into The Smile Train patient database and the results of procedures are to be audited in accordance with their standards of care. This departure in approach is notable for its emphasis on facilitating trips by foreign plastic surgeons who may not care for cleft children in their home practice. The application for the new program includes only the most cursory questioning on competence to perform cleft lip/palate repair. The Smile Train was founded, in part, as a reaction to the culture that stressed quantity over

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quality in surgery. This new change of approach seems to represent a reversal from other ‘mission’ styles. While The Smile Train has always had high standards, there is concern that their commitment to the highest quality care will be derailed in favor of sending more surgeons out ‘into the field’, irrespective of expertise in cleft lip/palate repair.1

SUMMARY With each iteration of large-scale charities, the type of care and measure of success has evolved. The goal has changed from that of treating the largest number of patients to training and supporting medical professionals and organizations. Accountability grew from none, to personal recollection, to sporadic records, to web-based, formalized quality review. The ratio of productivity to overhead and number of patients treated has also increased dramatically as these groups have adopted the organizational conduct of well-run companies.2

EVOLVING PRINCIPLES The evolution of surgical philanthropic efforts has been influenced by several professional organizations. Guidelines on surgical overseas visits are set out by international bodies, such as the Volunteers in Plastic Surgery program (VIPS), The American Cleft Palate-Craniofacial Association (ACPA), and the International Plastic Reconstructive and Aesthetic Society. Supplementary anecdotes and advice on international surgical volunteer visits are published in over 50 journal articles. Many of the same principles are cited by numerous authors, although their visions of ‘missionary’ surgery vary widely. Certain principles are universally valid, whether one is a single surgeon traveling with limited provisions to an isolated clinic in the jungle or a multidisciplinary team descending on a large city hospital with crates of supplies. Some of the guidelines governing conduct and goals of surgical philanthropy are broad enough to apply to all the various ways in which specialty care can be exported. For example, the mission statement of VIPS is to serve, train, educate and conduct research in areas of the world where there is need and where surgeons from Developed Countries are invited visitors. VIPS guidelines underscore that the visiting surgeons must work in conjunction with local surgeons and must be formally invited to participate in the care of patients in that locale. These guidelines further state that an operation should be done ‘by experts or senior residents or fellows under their supervision’ and that the ‘team leader should be board certified’. Unfortunately, it is not specified whether or not the ‘team leader’ practices the specific type of procedures, e.g., repair of the cleft lip/palate, in their home country. VIPS states the ‘mission’ should not include untried, experimental, or aesthetic surgery. Regulations about appropriate follow-up, team composition requirements (therapists, dentists, orthodontists, etc.) are not included in their guidelines (Volunteers in Plastic Surgery, 2007).

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Natsume (1998) has also suggested broad guidelines. These include a long-term plan for technology transfer, an understanding of local laws, customs, and systems, collaboration with local doctors, and quality assurance for participating doctors. Visits should not be religiously, politically or profit-motivated. Visiting surgeons should act as both teachers and practitioners and should accept responsibility for the convalescence of the patients on whom they operate.

THREE COMMON PRINCIPLES Three common principles to follow when delivering health care to Developing Countries are: 1. Build and support the local infrastructure. 2. Create long-term, self-sufficient care. 3. Adhere to the highest standards. BUILD AND SUPPORT THE LOCAL INFRASTRUCTURE One concept that applies to all locations and varied systems of health-care delivery is the need to support the existing medical infrastructure. This principle requires that the ‘mission’ has as its basic goal the permanent improvement of the local medical establishment in ways that are not directly dependent on outside assistance. As Abenavoli (2005) clearly stated, organizations that empower the local medical community are those that integrate with and attach themselves to the domestic socio-medical community, by working together with physicians and paramedics in a personal and collaborative manner to share professional experiences and by donating medical equipment that allow these professionals to become autonomous in their local efforts.

Also commenting on the important role of the local medical community, Robinson (2006) wrote: If you do not have a support group in that country, then you shouldn’t operate there and leave behind any particular problems, unless of course, you are willing to stay there or come back and take care of them. I attest that providing alternative care to the local health system, even in a long-term and comprehensive manner, sets a precedent for reliance on foreign aid and undermines respect for the local infrastructure, akin to medical imperialism.

CREATE LONG-TERM, SELF-SUFFICIENT CARE A ‘mission’, whatever its purpose, is a finite endeavor. It has been argued that this is its greatest liability. There seems to be a consensus among the medical community that ceasing to provide necessary medical care, or substituting sub-standard care, is

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unacceptable. Mulliken (2004) wrote about surgical trips that focus on cleft lip/palate: ‘Usually, there is no continuity of care. These children need help with speech, dental and orthodontic services, and often secondary surgical procedures, and they must be followed until their facial growth is complete.’ Echoing this sentiment, Wolfberg (2006) stated, ‘Differences in the medical needs of populations, the skills of local health care providers, and the level of international collaboration present a challenge to volunteer organizations, particularly if they send volunteers for short periods.’ Indeed, there is general disapproval of ‘hit-and-run’ care, leaving local surgeons to manage post-operative problems after the foreign team has departed. There are two responses to the argument that surgical ‘missions’ must be sustained until local professionals assume responsibility. The standard answer is that given the circumstances of time and place, it is better to do something – anything – than to do nothing. Furthermore, groups whose resources are limited can, in time, change their modus operandi to provide more longitudinal care, even if it is delivered sporadically. Indeed, many groups aspire to transition to long-term, locally supplied, self-sufficient surgical care. These surgical ‘missions’ rely on community participation, such as a physician or local organization, that is dedicated to continuing care in the absence of the overseas visitors. The challenge of this feat is highlighted throughout the literature. Bermudez (2004) underscored that, ‘It is not easy to find a well-trained professional who is willing to work for free or almost for free, at home, weekly, and who is committed to an excellent result.’ In Zbar et al.’s (2000) model for cleft lip/palate repair in developing nations, the ‘independence’ phase, in which host health-care providers maintain the site during the absence of the guest team, may represent the greatest hurdle to true independence. Indeed, recruiting local participation is the greatest challenge, i.e., to overcome to provide sustainability in communities with an underdeveloped medical infrastructure. Since brief visits have a limited, and oftentimes negligible effect, ‘missions’ designed on this model of export need to carefully evaluate the medical environment into which they go. There are some settings where, on balance, there will be a net benefit from a short visit, but there are many more in which this model is unacceptable. ADHERE TO THE HIGHEST STANDARDS It is no surprise that quality is the major component of optimal standards of international surgical care. Theories of social justice and human rights justifiably criticize many international surgical trips for practicing new operative techniques and training inexperienced medical professionals on resource-poor communities overseas (Ward & James, 1990). Ideally, surgical teams should follow the highest medical standards to ‘guarantee that the quality of the treatment and the safety standards [are] as high as in any other surgical unit in countries with better resources’ (Ward & James, 1990). Zbar et al. (2000) suggested anything less is ‘perhaps irresponsible, or, at best, purely an aesthetic rather than a fundamental undertaking’.

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Dupuis (2004) wrote: There cannot be, for volunteer plastic surgeons, two standards of care: one for their cosmetic surgery patients at home, and another one, a sort of ‘good enough is better than nothing’ approach, for foreign humanitarian missions because there is little risk of malpractice action. There is only one standard of care, and that is one provided by surgeons qualified in that type of surgery, and it has to be met by all surgeons participating in humanitarian missions.

Linda D’Antonio, a speech pathologist at Loma Linda University who spends much of her professional life teaching abroad, echoed this sentiment: Few efforts have included attention to associated rehabilitation areas such as otologic care and speech treatment. Most of us reading these comments would not think of providing such uni-dimensional services for our cleft patients at home. Why are we allowing ourselves to accept this level of care abroad? (D’Antonio, 1990)

Aspects of high quality care for cleft lip/palate that are largely uncontested include: (1) comprehensive and multidisciplinary treatment; (2) experienced healthcare providers. The attempt should be made to establish centers that resemble as closely as possible those in the Developed World. At these centers, longitudinal, multidisciplinary care of the child is the goal. For the surgeon in the Developing World context, this should be the goal as well. A plastic surgeon should perform abroad only procedures performed regularly at home (Dupuis, 2004). Availability of resources, determination, and good fortune will help to determine how successful he/she will be in this endeavor. Adhering to the highest standards of treatment ensures that surgical visits avoid focusing on the number of operations completed. As Fisher states: ‘A team that sets out to teach will certainly put a lower emphasis on turning out large numbers of operations’ (Fisher, 1990: 16). One of the pitfalls of this long-standing debate on quality of care is that it does not take into consideration variations in medical landscape. For those who choose to go to the most remote places to treat patients with the least access to medical facilities, the standard of care will be unlikely to be equal to that delivered at home. Before embarking on such a venture, the team leader must be certain that the differential is as small as possible and that the benefits of delivering care at a lower level truly outweigh the risks. Ideally, surgical skill and knowledge should be the same. The differences are access to supplies, physical plant, absent multidisciplinary team and nature of the disorders one hopes to correct. It is a Panglossian surgeon who thinks that it is possible, necessary, or desirable that all surgical ‘missions’ be held to the standards that exist in the Developed World. Optimizing standards of care will reinforce the others. Co-ordination with the local community to build and support local infrastructure improves treatment and minimizes many issues of cultural sensitivity. As Zbar et al. (2000) wrote, ‘Guaranteeing patient safety, preserving indigenous culture, and teaching local surgeons the multidisciplinary approach to cleft care are key goals.’ Moreover, targeting the local infrastructure is more conducive to permanence and self-sufficiency. Establishing

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sustainable, locally delivered care helps to address the problem of follow-up and improves treatment overall. Finally, adhering to the highest possible standards depends on building a stable infrastructure in the local community.

CHALLENGING THE PRINCIPLES There is a debate as to whether a high quality of treatment can be achieved through a top-down approach or a bottom-up approach. A decision must be made whether one is committed to replicating, as closely as possible, care that is delivered at the highest levels in Developed Countries (top-down approach) or whether one will try to do one’s best with the available resources (bottom-up approach). As a profession, we have an obligation to continuously strive to find the most effective ways to improve delivery of care, regardless of the environment, situation, or setting. If we are successful, the point where the top-down curve and the bottom-up curve meet will continue to approximate, indicating ever-improving standards of care, independent of the availability of resources. It is unlikely that it is efficient for an individual, relatively inexperienced, plastic surgeon to organize, fund, and manage small expeditions to hospitals visited once or infrequently. Nevertheless, for the time being, in certain settings, this may be the only or best available option. Our responsibility is to provide better choices. In an ideal world, only surgeons with ‘acceptable’ levels of training would be allowed to participate in the care of children in Developing Countries; however, sometimes, this is simply not possible. There are many parts of the world where strict adherence to this standard would lead to high morbidity and mortality. The experience of the Italian group Comitato Collaborazione Medica (CCM) highlighted this problem in general and obstetrical surgery. They have been acting in concert with the UN over many years to perform and teach surgical procedures to individuals in the Sudan, where few doctors live and large portions of the population have limited or no access to adequate care. Instead of waiting in vain for experts to arrive, they have chosen to teach basic surgical skills to paramedical personnel. The results are not the same as if a Caesarean section or a hernia repair were performed by master surgeons but they are good enough to save lives (Meo et al., 2006). In the most remote, poorest parts of the African continent, timely access to expert physicians and surgeons is unrealistic. CCM’s solution was to train people to do the basic minimum to save lives in a variety of circumstances. The standard of care is clearly different from that in the Developed World. CCM’s argument is that the ethical and surgical standards of the Developed World should be modified in situations like this. What is the cost–benefit ratio? Can the operations be done safely? What are the minimum standards of care for different operations and how can they be modified under different situations? Should care in Los Angeles and Lesotho be governed by identical standards? If not, how and how much should they be modified? The debate within the plastic surgical community revolves around a single ideological difference. Is it better to do what one can with existing resources, i.e., to repair x

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number of children, or is it more important to build the closest possible approximation of the care that exists in Developed Countries? Certainly, the health-care infrastructure in most Developing Countries makes the achievement of the latter goal unlikely, at least through the work of individuals or foundations. Equally certain is the fact that submitting to the do-what-we-can mentality can be suboptimal, dangerous, and irresponsible. An alternative is a case-by-case analysis of the needs and resources of a given setting overlaid on a group of principles to govern surgical work abroad. The most advanced and well-established cleft centers in the Developed World have an experienced and interdisciplinary team of professionals working towards the single goal of habilitation of the child born with cleft lip/palate. These teams include plastic surgeons, anesthesiologists, audiologists, otorhinolaryngologists, dentists, orthodontists, speech and language therapists, and nurses. The timing of surgical repair and subsequent interventions is closely choreographed and audited. The families of these children are motivated, responsible, and reachable by phone, email and regular mail (Bearn et al., 2001). In contrast, the care of children with cleft lip/palate in most of the Developing World lacks most of these elements. ‘Missions’ have, for decades, filled only part of the surgical void, and only periodically. How closely must a ‘mission’ approximate the best available care for a given condition? What are the minimal elements for appropriate intervention?

A SURGEON FOR ALL SEASONS AND PLACES There is a relationship between the various settings where surgeons go and various modes of exporting surgical care. One could imagine starting at one end of the spectrum and positing that any surgeon, or health-care worker, could close a cleft lip, even though the result was both functionally and cosmetically poor (‘something or anything is better than nothing’). Most plastic surgeons would deem this unacceptable. Nonetheless, the argument could be made that there are some places and some people for whom such a substandard result would be preferable to the alternative of living with an unoperated lip (see Chapter 13, Bradbury and Habel). The next best option might be to have the repair performed by a junior or senior resident who plans to focus a career on cleft care. One might enlist the assistance of surgeons who might never do cleft repairs in their practice but are competent plastic surgeons willing to volunteer to perform this operation in Developing Countries. It is possible to imagine places and patients who would accept this sub-optimal care rather than have no care at all. A higher standard would be to send an active cleft surgeon whose weekly practice closely approximates the caseload in the Developing Country. This experienced surgeon would help a local surgeon who has specialized in cleft lip/nasal deformities and cleft palate repair. The ultimate goal would be a multidisciplinary center staffed by local experts where the personnel closely resemble those found in the finest cleft centers. Certainly, this would be the preferred choice of all patients and families anywhere in the world. Our goal, as a profession, should be to allocate resources to this end.

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In an attempt to address current shortcomings, many groups now place greater emphasis on teaching, adhere to higher standards for visiting surgeons, and are more selective in choosing their destinations than they were a decade ago. There is another possible prescription for a surgeon wishing to contribute to care of underprivileged children in the Developing World. Mulliken’s advice is to become an expert in one’s own country, ‘refining the craft of labiopalatal repair, writing, [and] teaching’, rather than traveling. If a surgeon wishes to travel abroad, the preferred strategy is to pick one country, one hospital, one local health-care system to assist until the local physicians are sufficiently able to perform the operations themselves. Another alternative is to send a local surgeon who is passionate about cleft care in his or her own country to learn by observing a master-surgeon in a Developed Country. In this way, one-to-one training between the surgeon and the pupil is delivered. This results in a lifetime relationship, sustained by exchanges of ideas, questions, techniques, and principles. Such a post-graduate interaction can now also be continued via the internet, including the exchange of digital images. Cases can be discussed both pre- and post-operatively between surgeons in Developed and Developing Countries.

FROM DEPENDENCE TO INDEPENDENCE Rather than simply outlining costs and benefits of different styles and philosophies, some authors offer algorithms for establishing cleft centers in the Developing World. The tripartite plan put forward by Zbar and colleagues (2000) consists of observation, integration, and independence. These phases coincide with many of the principles and suggestions discussed previously. The goal of their algorithm is the progression of both the visiting team and the local doctors from phase I (observation) to phase III (independence). In his discussion of the Zbar plan, Laub (2000) suggests that fourth and fifth phases are possible. The fourth phase entails the evolution of the newly independent local physicians into visiting surgeons in a less developed location. The student becomes the teacher. Phase V involves the continual improvement and refinement of surgical skills by the local team, up to and including the development of new techniques and, ultimately, perhaps even the elucidation of new operative principles. The goal is to develop a major center in that country for treating the particular deformity or disease, equal to the best the Developed World offers. A UNIQUE EXAMPLE OF A SURGICAL MISSION – DR. SAMUEL NOORDHOFF AND CHANG GUNG MEMORIAL HOSPITAL In 1958, Dr. Samuel Noordhoff completed his training in plastic surgery under Dr. Ralph Blocksma at the Butterworth Hospital in Grand Rapids, Michigan, USA. Dr. Noordhoff became aware of the need for a plastic surgeon at the MacKay Hospital in Taipei, and moved to Taiwan with his family. He learned the Taiwanese language and not only worked as a plastic surgeon, he became an administrator. Over the next

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15 years, he established centers for polio patients, children with cleft lip/palate, burn victims, and suicide prevention. He also started the MacKay Nursing School. In 1976, he became the Chief of Plastic Surgery at the new Chang Gung Memorial Hospital. Dr. Noordhoff had a vision and a simple plan: he recruited the brightest young Taiwanese surgeons and sent them abroad to Europe, North America, and Australia for specialized training. Then they returned to Taiwan. Noordhoff also found time to focus on perfecting his own techniques for repairing cleft lip/palate. Today, Chang Gung Memorial Hospital is one of the most modern and largest medical centers in the world (4,000 beds and over 100 operating rooms). Dr. Noordhoff’s prot´eg´es are leaders in the fields of cleft lip/palate, craniofacial, and microsurgery. They are not simply busy practitioners, they are academic surgeons involved in clinical and basic science research who write and publish in prestigious English-language journals. Plastic surgeons from Chang Gung travel around the globe to share their knowledge and skill with Developing Countries, while Chang Gung has become a mecca for young plastic surgeons.

THE NEXT LEVEL OF SURGICAL VISITS We propose that the next step in exporting surgical care overseas should not focus on direct patient therapy. The purpose of international volunteer surgical visits should be the development of the medical infrastructure. Of all the aspects of building a sustainable medical infrastructure in the Developing World, the most important is training local medical professionals. Following the training of local medical professionals, the next responsibility is the efficient, cost-effective provision of surgical equipment, such as sutures and operating room facilities. Most medical and philanthropic communities now largely agree that educating local medical professionals is the critical next level. Dupuis (2004) argued that ‘twenty operations performed perfectly for the purpose of teaching are better than 100 amateurish ones performed by volunteer plastic surgeons’. As long as local, trainable physicians are available, the value of an educational ‘mission’ far outweighs the value of a purely procedure-oriented surgical mission. Recognition that education is essential to building or supporting local infrastructure resounds in the medical literature: ‘If you give a man a fish, he feeds his family. If you give him a fishing pole and teach him to fish, he feeds his family for a lifetime.’ Nevertheless, as D’Antonio (1990) states: In practice, this goal is often relegated to a lower priority than a more tangible, measurable goal, such as the number of patients seen or the number of cases managed. This is understandable in that such data is concrete and can be quantified, which is valuable for accountability and fund-raising issues. Obviously, it is more difficult to deal with ambiguous and amorphous goals such as ‘empowering local people’ or ‘training.’ Nevertheless, there should be an increased emphasis on training local health care providers and community leaders in ways and means that they can help to improve the quality of health care for people whether we ever return again or not.

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Besides the benefit of creating sustainable surgical care, training medical personnel will generate positive public relations for surgical ‘missions’ that are often criticized for over-emphasizing numbers of operations per trip.

CONCLUSION In his article, Dupuis (2004) quoted the Chinese proverb, ‘It is better to light a candle than curse the darkness.’ It is laudable to care about people in parts of the world where there is little or no access to surgical care. On a fundamental level, it is important to feel connected to others. It is a privilege to care for others, especially, perhaps, those whom we do not know, will never see again, and from whom we will not receive payment. Even when the highest standards are followed, problems endemic to the surgical and the popular culture contribute to suboptimal interactions between visitors and hosts. Many plastic surgeons in Developing Countries cite the lack of compensation as a factor in their choice not to perform cleft lip/palate repairs. Frequently, however, the host surgeon seems more interested in the latest cosmetic techniques than in learning how to better repair a cleft lip. On the part of the patients, there is often the perception that even when an established cleft team exists in a Developing Country, visiting surgeons from abroad are somehow better. This effect not only is counterproductive to the efforts of the local surgeons but often inaccurate as well. Plastic surgeons have a long history of traveling to Developing Countries to operate on patients in need. They have journeyed as individuals and groups, as small and large organizations, and as sectarian and non-sectarian ‘missions’. Some of these individuals and groups have become well known through the media, while others remain largely anonymous. The highest standards should govern these surgical ‘missionaries’. The teams should be interdisciplinary. All participants must clearly and rationally evaluate the specific requirements of local milieu and the capabilities of both the regional professionals and infrastructure. Each team must have a clear sense of its own core capabilities and resist temptation to stray from its goals. Each ‘mission’ must be tailored to fit the particular location. Equipment should be of the highest possible quality, procedures planned with the utmost care and performed by the most skilled practitioners available. ‘Missionary’ surgery should not be a publicity-generating event or a way to assuage some more or less recognized guilt. As a profession, we must continue to work towards the far end of the spectrum where all patients receive the best possible surgical care, ideally by their fellow countrymen.

NOTES 1. Editorial note: The Smile Train was invited to contribute a chapter to this volume but declined. 2. The editors also draw the reader’s attention to the issue of payment to surgeons by these large organizations for undertaking cleft lip and palate repair. This runs

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the risk of distorting the local surgical environment and rewarding individuals not genuinely interested in these anomalies.

REFERENCES Abelson R & Rosenthal E (1999) ‘Charges of shoddy practices taint gifts of plastic surgery’, New York Times, 24 November. Abenavoli FM (2005) ‘Operation Smile humanitarian missions’, Plast Reconstr Surg 115(1): 356–7. Bearn D, Williams A, Mildinhall S, Murphy T, Sell D, Murray J, Sandy J & Shaw W (2001) ‘Cleft lip and palate care in the UK – the Clinical Standards Advisory Group (CSAG) Study. Part 4: outcome comparisons, training and conclusions’, Cleft Palate Craniofac J 38: 38–43. Bermudez LE (2004) ‘Humanitarian missions in the third world’, Plast Reconstr Surg 114: 1687–9; author reply 1689. D’Antonio LL (1990) ‘Commentary to Ward & James’, Cleft Palate J 27: 15–17. Dupuis CC (2004) ‘Humanitarian missions in the Third World: a polite dissent’, Plast Reconstr Surg 113: 433–5. Fisher JC (1990) ‘Discussion’, Cleft Palate J 27: 16. Laub DR (2000) ‘Discussion – Establishing cleft malformation surgery in developing nations: a model for the new millennium’, Plast Reconstr Surg 106: 890-1. Meo G, Andreone D, De Bonis U, Cometto G, Enrico S, Giustetto G, Kiss A, et al. (2006) ‘Rural surgery in Southern Sudan’, World J Surg 30(4): 495–504. Mulliken JB (2004) ‘The changing faces of children with cleft lip and palate’, New Engl J Med 351: 745–7. Natsume N (1998) ‘Safari surgery’, Plast Reconstr Surg 102: 1304–5. Robinson O (2006) ‘Humanitarian missions in the Third World’, Plast Reconstr Surg 117(3): 1040–1; author reply 1041. The Smile Train, http://www.smiletrain.org (accessed 28 June 2007). Volunteers in Plastic Surgery (2007) http://www.plasticsurgery.org/medical professionals/ service giving opp/Volunteers-in-Plastic-Surgery (accessed 28 June 2007). Ward C & James I (1990) ‘Surgery of 346 patients with unoperated cleft lip and palate in Sri Lanka’, Cleft Lip Palate J 27: 11–15; discussion: 15–17. Wolfberg AJ (2006) ‘Volunteering overseas – lessons from surgical brigades’, New Engl J Med 354: 443–5. Zbar RIS, Rai SM & Dingman DL (2000) ‘Establishing cleft malformation surgery in developing nations: a model for the new millennium’, Plast Reconstr Surg 106: 886–9; Discussion, 890–1.

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So You Want to Help in a Less Developed Country? BRUCE RICHARD

Editorial comment: The author has worked for many years in a Developing Country (Nepal) and also been a member of a large visiting multidisciplinary cleft team (Ethiopa). He gives advice in an informal style, which may be particularly relevant to those who seek an independent path. He also gives a personal view on the benefits and conflicts between different ways of delivering cleft service in Less Developed Countries.

INTRODUCTION You have always promised yourself that one day you will actually go and do one of those Developing Country cleft trips but you’re a little anxious that someone might accuse you of going off on a surgical safari, and you are aware that some of these trips can have damaging effects on a Less Developed Country’s (LDC) cleft surgery infrastructure. I have collected in this chapter some thoughts, attitudes and reflections on various styles of assistance to a Less Developed Country’s cleft service, harvested from a nine-year experience of living in Nepal and setting up a regional cleft service there. You might begin by asking yourself some questions. What is the purpose of the visit and who is going to benefit? Do you have the right skills that are needed? Can you help in a culturally sensitive way? Can you teach rather than demonstrate? Can you leave skills, instead of operative complications, behind? Can you help the national surgeon do a better job with what equipment is to hand rather than importing hightech, expensive, or disposable equipment? Can you or other colleagues visit the same place regularly (annually), rather than helping the national surgeon come to the UK for training and never going home again! What cleft surgery infrastructure already exists, and are you competing or enhancing it by your trip?

Management of Cleft Lip and Palate in the Developing World. Edited by Michael Mars, Debbie Sell and C 2008 John Wiley & Sons, Ltd Alex Habel. 

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ISSUES If you are preparing a short-term visit to do cleft surgery in a Less Developed Country, consideration of the following six issues might help you plan: 1. 2. 3. 4. 5. 6.

timing of the trip; visa and work permits; taking care of your health; attitudes and actions; cultural awareness and civility; rest and relaxation.

TIMING OF THE TRIP Your personal time frame for life in your own country is busy, and the itinerary you plan might be tight, but still try and be flexible in planning the visit with your host. They are also constrained by many issues beyond their control, such as national holidays, festival days, local politics, water, electricity or staff shortages, etc. Weather can make a huge difference to patient accessibility to the hospital, i.e. a dry or rainy season, and you need to plan your trip around that, as well as around your home country life! Finalize the date of your trip at least 6–12 months in advance, so that the local surgeon can collect relevant cases for the visit. Usually the local team will not have a method of recalling patients by phone or letter, and can only give them an operating date when they are actually sitting in front of them in the Outpatient Department. Consider how many non-medical folk may come with you on the trip, for example, a spouse, children, friends. There is often nothing really useful that they can do, yet they often want to do something helpful. Make sure that they are not a burden to your host; the host has enough to do without having to organize lots of sightseeing for your relatives, emailing granny or dealing with their gut rot, as well as managing an especially challenging operating list! Sometimes the hassle factor from the national surgeon’s point of view in organizing an international visitor is of borderline benefit relative to the effort required for the opportunity afforded to him. So don’t be miffed if it all seems too hard to organize! VISA AND WORK PERMITS In some countries it will be acceptable to visit as a ‘tourist’ and the local surgeon will give you operating privileges. In other countries this is specifically disapproved of and you will need to get a visiting work permit in addition to a visa. This may not be possible to initiate prior to your visit, and may have to await your arrival in the country. The necessary bureaucracy is often slow and possibly indifferent, so whatever transpires ensure you take a copy of your MD, MB, BS or equivalent graduate qualification, surgical degree and a current professional registration certificate. You will need at least six passport photos and a few dollars to make it all happen. Find out about this well in advance.

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TAKING CARE OF YOUR HEALTH Check that your vaccination status is up to date, and adequate for the country you are visiting. Take special care over your Hepatitis A/B and malaria prophylaxis. Notify and discuss your plans with your personal physician. A very useful UK organization is Interhealth (see Resources on p. 28), a private, excellent and cheap service offering advice on vaccinations, and general health matters, both physical and psychological. It will provide this help both before you leave, while you are there, and debrief you medically and emotionally if necessary, on your return.

ATTITUDES AND ACTIONS Try to be flexible. Do operations with what is locally available rather than taking an entire set of personal instruments with you. This means that the local surgeons also can do the operation themselves after you have gone. Try also to use the local nurses and anaesthetists, rather than coming with a whole team, and showing them how it is done. Do not perform new or difficult operations because you would enjoy the challenge, rather help them to do a possibly more appropriate operation themselves. They may be in awe of you, so be careful on pre-operation ward rounds regarding planning a procedure that is outside of your normal repertoire just because they want you to do it, or because it would be fun. They might be left with the complications. Be careful about ‘taking over’ because of your experience and skill. The idea is to facilitate the local national surgeons to be able to do procedures that they might not attempt without your support, and so enable them to do them again after you have gone. Remember that the local population sometimes considers its own doctors to be corrupt and lazy, and the locals do not allow their own doctors the luxury of having normal complications, etc. For you, however, they will allow a much bigger margin of error, because they have more faith in you, and if the patient dies, it is much less likely for you to be blamed, compared to the national surgeon. This often means that the national surgeon will not undertake risky procedures as failure damages his reputation, but he will encourage you to take the risks. This may help you decide to do a procedure that is not normally done there, but try very hard to let the local surgeon be the actual operator and let the local people see his success. The local, national surgeon will be most deferential and polite to you, the esteemed visitor, so try to identify the real issues, and make sure that your operative suggestions are not being followed just because of you, but because they actually fit the local scene appropriately. The local scene is probably busy and stressed with a normal workload. Be careful your visit does not displace local surgeons from their routine lists by your eight-hour ear reconstruction!! Emergencies probably do not have a separate theatre, so make space for obstetric and other emergencies. If a local system works, however apparently disorganized, perhaps only suggest changes based on your pattern or style of work in your home country as a point for discussion. Explore before your visit what the existing set-up is for elective plastic surgery and whether your visit might destabilize an existing system. A radio announcement

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for free operations can ruin the elective list for another surgeon working elsewhere in the region. You have power by nature of your skill, position and ability to help these doctors possibly visit your own country, so they will be very careful and eager to please you. Beware of the ‘surgical safari’ (Ward, 1994) where you or a more junior colleague use the opportunity to operate on cases such as clefts that you may not be currently managing in your home country’s practice. If anyone is operating on the cleft for the first time, it should be the local surgeon and not a visiting trainee. CULTURAL AWARENESS AND CIVILITY Doctors are still the most senior members of these societies and dress appropriately, so be sensitive to the need to have covered feet, wear shoes not sandals, and wear a tie in cooler weather. Shorts are not the attire of a professional surgeon, unless he is on the beach! Women must keep themselves covered up including their shoulders and upper arms, and in Muslim countries the dress code may be stricter than that. Many Developing Countries have deeply conservative lifestyles and your conduct needs to reflect your respect for that. You may be a guest of the national surgeon, stay with other expatriate personnel or in a hotel. Remember that these people have a fraction of the disposable income that you have, and yet they will try and impress you with their best cuisine, and precious goodies. Be generous in your thanks for their hospitality, and certainly offer to pay for your room and board. Try to eat the local food, rather than taking a suitcase of your local supermarket’s tins with you. They will appreciate it enormously if you eat with them in their humble homes, sitting uncomfortably rather than staying in the local tourist hotels. Remember, PEOPLE and RELATIONSHIPS are often much more important in these cultures than the Protestant work ethic of getting lots of work done. This means less numbers of clefts done per day and more time talking and building a relationship. This is why it is so much better to go back to the same place next year and build on these relationships, rather than collecting T-shirts from each nation in the world! REST AND RELAXATION If you plan sightseeing or travel while there, it is often a good idea to do it immediately after the operating period is finished. Leave time at the end of the sightseeing to do another post-operative ward round or outpatient clinic, to see complications and advise further management. This applies especially after you have performed on a condition or used a procedure that is new to you and the national surgeon.

INTERNATIONAL CLEFT ORGANIZATIONS – THE GOOD AND NOT SO GOOD In December 2005, I went to Ethiopia for the first trip to that nation by an organization called Operation Smile, to treat some patients, but more importantly to begin

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the process of changing the infrastructure so that Ethiopian surgeons could do this work themselves. There were several amazing aspects to this trip. Not least was the size of the team with 49 expatriates to ‘make it all happen’. The team comprised six surgeons and six anaesthetists, numerous operating and post-operative care nurses, intensive care specialists, equipment technicians, photographers, data collecting administrators, a manager and a paediatrician. Unusually, it also included a lawyer and a project administrator to negotiate with government officials, and education experts to help set up teaching modules in the nurse training schools and the university hospital. Additionally, we had students (17 year olds) to give community education and school programmes to help public awareness. We were a diverse group from many nations, comprising a Vietnamese and Ghanaian plastic surgeon, both ladies, as well as American, Canadian, Irish and British (me) plastic surgeons. Other nations included Kenya (five people), Australia, Italy, Argentina, and Ethiopia itself. The youngest was 17 and the oldest (a retired lawyer) was 67. This kind of project needed all sorts of people with a wide variety of skills. In nine days, we saw 419 patients with a cleft lip and/or cleft palate. We successfully operated on 184 of them, ranging in age from 6-month-old babies up to a 60-year-old lady who had never had her cleft lip repaired. We met the president of the country, the leaders of national training programmes, Live Aid donors, ate at a restaurant where Brad Pitt and Angelina Jolie had eaten the night before, and saw a little bit of the rich and ancient culture of Ethiopia. This was a worthwhile trip and Operation Smile has been back each subsequent year and started visits to peripheral centres hundreds of miles from the capital. Organizations such as The Smile Train and Operation Smile have many excellent aspects but also some not so worthy, and I would like to highlight them both for debate and consideration: r Professionalism. One good development is that these organizations have stopped the practice of ‘surgical safaris’ for junior surgeons from Developed Countries to obtain ‘hands on’ experience of cleft surgery by ‘practising on the natives’. This is because each doctor has to be an accredited cleft surgeon in their own country’s health service before they can be accepted as a surgeon on one of these trips. r Safety is also a vital issue for such organizations, with an ethos of ‘no deaths on my watch’. To this end, huge expense is incurred in cargo and equipment, for example, to ensure the best equipment for anaesthesia and monitoring, including pulse oximetry and end tidal CO2 monitoring, and providing the best instruments and suture materials. This is additional to the cost of transporting a large team capable of delivering intensive care for the potential complications of anaesthesia. It may be a First World standard of medicine but is it the local nationals’ plan to carry on like this? This sends a powerful message of ‘You can’t do this after we have left.’ r Education is strongly emphasized, often focusing on infrastructure support for nursing, ITU, the community, and political change to facilitate a cleft service in the future. In concert with this policy I chose to limit myself to 6–7 cleft operations a day (instead of 8–9) to allow time for the national surgeon to do more than just assist, and support him to develop the skills and confidence to do the operation

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himself. Facilitating the national surgeon to learn how to do the operation was encouraged and supported by the surgical team leader. r Epidemiology data collection. This is excellent for world cleft databases. The ‘not so worthy’ is the detrimental side effects of money and power. These organizations are rich, even very rich, and they have enormous power because of this. I think it regrettable that they appear to lack insight into the possible effects of this power, and have a self-righteous smugness in the correctness of their view. Criticism of this is thereby categorized as wrong. This cultural arrogance means that they do not always search out the established infrastructure of the Developing World countries they visit, but rather invent a new one of their own making. Many local nationals will join this bandwagon just because of its success, and because they want to enjoy good food in nice hotels. This can destabilize existing structures and the balance of conditions treated. Where the national infrastructure has taken over cleft cases to co-operate with these organizations, the local surgeon may receive $120–250 per case. I am not against this per se, but it does depend on the integrity of the surgeon to use this money to further cleft surgery availability to the poor and rural patients. The best path of development is for the country to grow its own capacity for funding and doing these surgeries. When I was in Nepal, a patient coming to the government hospital paid $15 for a cleft operation or received it without fee from our hospital’s poor fund, while the visiting ‘big team’ offered a free operation to all. This resulted in one of my cleft lip and palate patients travelling to Kathmandu, in response to a radio announcement offering a free operation, and having a cleft lip repair at age 3. I would have done the lip and palate operation a few weeks later for $15, or free if necessary. The patient came to me again at age 7 with the unrepaired cleft palate. A good speech outcome was now potentially less likely.

THE WAY FORWARD There are several models for delivering and developing cleft services in Developing Countries and all have their strengths and weaknesses. Hopefully this chapter will encourage you to get involved, with reflection and a sense of integrity towards those who you are actually helping and how you go about it. The bottom line: Are you FLEXIBLE, RESOURCEFUL, and CULTURALLY SENSITIVE and do you have TRANSFERABLE SKILLS to pass on?

RESOURCES USEFUL ADDRESSES Department for International Development (DFID) (useful if you want to keep your NHS job but offer your help in an emergency or disaster situation), www.dfid.gov.uk/emergencies Interhealth, 111 Westminster Bridge Road, London SE1 7HR. Tel.: 0207 902 9000, Fax: 0207 928 0927, website: [email protected]

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International Health Exchange has a list of charities, NGOs, etc. concerned with developing world medicine (both emergency and established set-ups) and may be able to help you find a location overseas for a short visit. International Health Exchange, 8–10 Dryden Street, London WC2E 9NA. Tel.: 0207 836 5833, Fax: 0171 379 1239, [email protected] Website: www.ihe.org.uk The Tropical Health and Education Trust: www.thet.org World Service Enquiry offers information on volunteering for development for longer periods: www.wse.org.uk

USEFUL BOOKS British Medical Journal, ABC of Healthy Travel, 5th edn, London: BMJ, £13.95. Available from: BMJ, Tel.: 0207 383 6185, Fax: 0207 383 6662, email: [email protected] Dr Ted Lancaster, Good Health, Good Travel, London: Hodder and Stoughton, £5.99. This is a guide for backpackers, travellers, volunteers and overseas workers. Available from: Interhealth, see above. The Lonely Planet series is good for guides to different countries. People in Aid: Code of Best Practice, February 1997. Available from: International Personnel, BRCS, 9 Grosvenor Crescent, London SW1X 7EJ. Tel.: 0207 235 0895

REFERENCE Ward CM (1994) ‘Teaching, training and travelling’, Br J Plast Surg 47: 280–4.

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Challenges for Cleft Care in the Developing and the Developed World BRIAN SOMMERLAD

Editorial comment: The author is a plastic surgeon with a long record of innovative surgery on cleft lip and palate patients in the UK and in Developing Countries. This chapter addresses the challenges in both the Developing and the Developed World and describes the problems faced by both separately and when working together.

INTRODUCTION The separation of the world into ‘developing’ and ‘developed’ is artificial and rapidly changing. However, the challenges faced by the richer and poorer parts of the world are very different, with each having its own problems and priorities.

THE WORLDWIDE PROBLEMS NUMBERS OF PATIENTS The first obvious difference is in the numbers of patients. There may be 250,000 babies born each year with some sort of facial cleft. Of these, the great majority are born in Developing Countries. This inequality is further compounded by the fact that many are born in rural areas while medical care is concentrated in bigger cities. In many Developing Countries, there are simply too few competent surgeons to cope with the numbers of patients. In the Developed World the opposite may apply. Surgeons in many specialties like doing cleft surgery, and in most Western countries there has been little control over who is allowed to operate on a patient with a cleft. The consequence has been (and continues to be) that there are many teams in the Developed World operating on small numbers of patients. Most surgeons believe that there is a long learning curve in cleft Management of Cleft Lip and Palate in the Developing World. Edited by Michael Mars, Debbie Sell and C 2008 John Wiley & Sons, Ltd Alex Habel. 

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surgery (Sommerlad, 2003) but small volume units simply do not provide surgeons with the opportunity to approach the top of the learning curve. The variety of cleft conditions and operations makes this even more relevant. A cleft team treating 25 new babies per year (regarded in some countries as a reasonable number) would therefore expect to treat two or three babies with bilateral clefts of lip and palate annually, and a surgeon’s lifetime experience would therefore be very limited. It is for this reason that the UK and some other countries have reduced the number of cleft teams – in the UK, from 57 to 9 in England and Wales following the recommendations of the UK government Clinical Standards Advisory Group (1998). ACCESS TO CARE In the Developing World, the discrepancy between the numbers of patients and those available to treat them results in many cleft patients having no access to care and their clefts remaining unrepaired. Others are repaired by surgeons with little or no experience and the outcome may actually be worse than if they had no surgery at all. The problem in the Developed World is that many patients are operated on by low-volume surgeons with limited experience and inadequate teams. PRIORITIES For understandable reasons, Developing Countries have other health issues which receive more attention. They are faced with major life-threatening illnesses such as HIV, TB, malaria and gastro-enteritis. Many Developing Countries also give priority to illness prevention, public health and primary care. Hospital medicine, and especially what might be regarded as ‘quality of life’ surgery, therefore, have to take a back seat. Even in many Developed Countries, cleft surgery may be seen as the rather simple exercise of ‘sewing up’ a lip or palate and the major physical, social and psychological sequelae may not be recognized. SOCIAL AND PSYCHOLOGICAL EFFECTS OF HAVING A CLEFT In Developing Countries, having a cleft may severely limit life prospects. Children with unrepaired or poorly repaired clefts may not go to school and adults may not marry and have families. Local, cultural and religious factors may affect attitudes towards people with clefts and these may differ even within a country. For example, a brief study in Uganda (Chapter 13, Bradbury and Habel) showed that in one part of Uganda a cleft was thought to be the curse of Satan (and many children with clefts were called Ajok for girls or Ojok for boys, meaning ‘of Satan’) while in another part of Uganda it was thought perhaps to be part of God’s plan. In yet another part it was thought to be due to some problem in the womb. Parents’ beliefs may therefore affect their willingness to care for children with clefts and to bring them for surgery.

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In most Developed Countries, there are few patients with unrepaired clefts and having a cleft doesn’t decrease educational prospects, although some studies have shown that fewer develop relationships and marry, and there are significant psychological consequences in a society where so much importance is placed on appearance.

MULTIDISCIPLINARY TEAMS In Developing Countries there may be no tradition of multidisciplinary team working. Surgeons have tended to dominate cleft care and may in fact be somewhat reluctant to share responsibility. In many countries there may be few orthodontists or speech and language therapists, and team management may not be possible, even if desirable. Gradually, in Developed Countries, responsibility has been devolved from surgeons and care is shared by a multidisciplinary team, but this is not always without conflicts and problems – and importantly, in a world where economies in health care are increasingly being sought, multidisciplinary care is expensive.

RECRUITING SURGEONS AND KEEPING THEM INVOLVED IN CLEFT CARE Young surgeons in Developing Countries, faced with the prospect of doing nothing other than cleft surgery because of the numbers of cases, understandably wish to develop other skills. In addition to the workload of cleft patients there are other problems, such as burns contractures, to be faced. In addition, the understandable need to augment income with private practice means that time for cleft surgery may be limited. However, in many Developed Countries, young surgeons (especially plastic surgeons) tend to see cleft care as a rather narrow sub-specialty, with limited opportunities. Here, too, finance is a factor as surgeons may be lured by the rich rewards of private cosmetic surgery.

TRAINING OF SURGEONS Developing Countries obviously have a great potential to train young surgeons, as there are so many patients who require operations. Unfortunately, surgeons from Developed Countries have sometimes taken advantage of this teaching potential for the training of their own residents and registrars on ‘missions’. Some Developed Countries have arguably not yet found the right formula for training in cleft surgery. In the United States, for example, trainees in plastic surgery are all required to have some experience of cleft surgery and yet few will operate on clefts and some should not. The UK, in centralizing cleft care, has taken the position

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that only a small number of surgeons need to experience hands-on cleft surgery, but this poses problems in selection and manpower planning.

MISSIONS – ESPECIALLY ‘PARACHUTE MISSIONS’ Many Developing Countries have been invaded by missions from Developed Countries. Often the surgeons in these missions have been inexperienced surgeons who do not perform cleft surgery in their own countries, sometimes bringing residents to give them an opportunity to learn. The worst examples of these missions bypass local surgeons in organizing their visits. At the end of their 10-day or two-week ‘mission’ they leave nothing behind – except perhaps disasters. Of course, not all missions are as bad as this and ‘mission organizations’ have increasingly recognized the need for liaison and training. However, it is inevitably very difficult for visiting surgeons to adapt in a short period. They cannot understand local problems and they may be unaware of local customs. Nonetheless, at best they can work with local teams and learn from them. There is a great danger, however, that such missions exist primarily for the easing of consciences of relatively wealthy surgeons from Developed Countries and as the means of delivering ‘pseudo-training’ to trainees who would have little opportunity to gain experience in their own countries.

OUTCOMES Patients in Developing Countries are much less likely to return for follow-up and surgeons therefore have less opportunity to assess their own outcomes. Patients also tend to be generally less critical. However, Developed Countries are also facing difficulties in obtaining honest and objective measures of outcome. There is little external audit in the Developed World and patients and parents are poor judges. Studies such as the Eurocleft Study (Shaw et al., 1992) have shown wide variations in outcomes and yet such inter-centre comparisons are rare. The UK CSAG study (1998) showed generally disappointing outcomes across the country but very wide variation between relatively high-volume units. Presumably, however, the parents of children treated in those units were not aware of these differences.

LONG-TERM RESULTS It is recognized that many of the outcomes in cleft care cannot be assessed until maturity. In Developing Countries, long-term follow-up is rare. There have been few objective long-term outcome measures in Developed Countries and unfortunately,

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when a surgeon’s long-term outcomes are known, he or she will be towards the end of their career.

PROTOCOLS AND TECHNIQUES Surgeons in Developing Countries tend to follow what was taught by famous surgeons from Developed Countries. Unfortunately, many of these techniques were unproven and found ultimately to be misguided. The three or four flap push-back palatoplasty of Wardill–Kilner (Wardill, 1937; Kilner, 1937) is an example. This has left a residue of scarred palates, difficult fistulae and retruded maxillae around much of the Developing World. Surgeons in the Developed World may also be slow to move on from what they have been taught.

THE WAY FORWARD 1. Each country must, in time, train enough competent clinicians who will make cleft lip and palate a major part of their practice. 2. The Developed World needs to support evolving cleft care in the developing world – and not with ‘parachute missions’. The aim should be the empowerment of local surgeons. 3. Teams from the Developed World should link with their counterparts in mentoring and twinning arrangements. In future, such links will come increasingly from countries such as India and China as they become increasingly sophisticated in cleft care. 4. Multidisciplinary teams need gradually to be developed, beginning with surgeons, speech and language therapists and orthodontists, but expanding in time to form the more comprehensive teams which provide care in the better Western units. However, equally and perhaps more important are the anaesthetists, paediatricians and nurses, who provide safe care for the children being operated upon. 5. Protocols and techniques need to be evidence-based and appropriate for the situation. Proponents of delayed hard palate closure or nasoalveolar moulding need to reflect whether such techniques, requiring considerable input from a range of clinicians, are appropriate for the Developing World. 6. Politicians and health policy-makers need to be informed of the economic and social benefits of good cleft care. They need to understand that cleft lip and palate treatment is: 1. relatively inexpensive; 2. low tech; 3. concerned with communication – it’s not just cosmetic; 4. important to education and employment AND psychosocial well-being; 5. quality of life surgery.

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CONCLUSION All health-care delivery systems are facing challenges. The problems of cleft care are reflected in these systems with cleft care being a challenge in all of these systems. Surgeons in Developing Countries have a great deal to learn from those working in much more difficult circumstances, with huge workloads but with the opportunity to become world leaders in this field. The priority is good primary surgery, thus minimizing the need for secondary intervention and reducing the burden of care for patients and parents. Although much of the emphasis has been on repair of the cleft lip, in many ways cleft palate repair is more important for communication and longterm outcome and it needs to be given more priority. The aim of all of us should be to improve care worldwide.

REFERENCES Clinical Standards Advisory Group (1998) Report on Cleft Lip and/or Palate, London: The Stationery Office. Kilner TP (1937) ‘Cleft lip and palate repair technique’, in Maingot R (ed.) Postgraduate Surgery, vol. III, London: Medical Publishers. Shaw WC, Dahl E, Asher-McDade C, Brattstrom V, Mars M, McWilliam J, et al. (1992) ‘A six centre international study of treatment outcomes in patients with clefts of the lip and palate: Parts 1–5’, Cleft Palate Craniofac J 29: 393–418. Sommerlad BC (2003) ‘A technique for palate repair’, Plast Reconstr Surg 112: 1542–8. Wardill WEM (1937) ‘Technique of operation for cleft lip and palate’, Br J Surg 25: 97.

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Cleft Lip and Palate Management in the Developing World Primary and secondary surgery and its delivery JAMES LEHMAN

Editorial comment: This chapter is based on the strong personal views of the author and his long-standing experience in South America. Lehman’s views may possibly be regarded as somewhat trenchant but do represent his beliefs and practice. Many might wish to take issue with some of the statements, for example, his views on delayed hard palate closure and that speech is the priority area, together with related comments about the safety of pharyngoplasties and the role of speech prostheses in such an environment. Not everyone in the field has shared his fortunate experience of finding ‘good anesthetic and monitoring equipment’ in the Developing World. While the washing of gloves ‘followed by sterilization’ may be the routine practice in many places, this should not be considered ‘proper techniques’.

INTRODUCTION So you have decided to go on a ‘mission’ outside your home country to perform cleft lip and palate surgery. That decision is fairly easy and you feel good about the prospect of helping disadvantaged children in a Developing Country. The first question you need to ask yourself is: Are you a cleft surgeon? Do you do primary cleft surgery regularly and can you do secondary cleft surgery such as fistula closure, alveolar bone grafts and pharyngoplasty? Even more importantly, do you know how to work with a speech pathologist in a multidisciplinary team setting? If the answers to the above are no, you should rethink your decision or go on a trip where you perform a limited scope of surgery with supervision. Performing this type of surgery outside your own country can be demanding and one should adhere to the standards established by the American Cleft Palate-Craniofacial Association (ACPA). Basically, the ACPA supports the efforts of individuals and

Management of Cleft Lip and Palate in the Developing World. Edited by Michael Mars, Debbie Sell and C 2008 John Wiley & Sons, Ltd Alex Habel. 

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organizations to do this humanitarian work but individuals should only provide the type of care for which they have credentials in their home country. The interdisciplinary team approach should be fostered and finally individuals should not attempt to obtain credentials to perform this type of surgery through unstructured surgical experiences outside their home country (Lehman & D’Antonio, 1992). There are two important keys to surgical success: (1) do not leave fistulas; and (2) speech is the number one priority. If you have normal speech, it is easier to get a job even if your lip scar is poor or if you have severe maxillary retrusion. On the other hand, it is difficult to get a good job if your speech is unintelligible no matter how perfect your lip or how beautiful your smile (Neiman & Duncan, 1986)!

CULTURAL ISSUES, CUSTOMS AND FACILITIES Every country has its own unique customs and cultural issues which the visiting team must be sensitive to. You will need to be aware of and respect their values so that misunderstandings can be avoided. For example, in Bangladesh, 260,000 children and adults are waiting for operative correction of their cleft lip and palate. The selection criteria applied may be different than in the western world. Closure of the lip in an 18-year-old girl may be more important than lip closure in a young child because it will increase her chances of getting married (Spauwen & Chandra, 2005).

LOCAL HOSPITAL FACILITIES The facilities in developing countries vary, but most have good anesthesia and monitoring equipment even if the operating room itself is old. Many hospitals reuse their gloves, which is not a problem as long as they are properly sterilized. You must remember you are not at home. Most developing countries resterilize items that we discard and you will not have all the suture choices and special instruments you are used to. If there are special items you feel you will need (instruments, retractors or sutures), take them with you. Take Marcaine and use it on all cleft patients. It will reduce the need for narcotics. Be prepared for surprises. Be adaptive with the equipment. Remember, 90% of the world works on 220 volts. A Swiss Army® knife, superglue, and duct tape are indispensable. The type of hospital where the surgical team will work will influence the volume and scope of surgical procedures that can be performed. In a small hospital (20–30 beds) with only one or two operating rooms and no ancillary services like a blood bank, dedicated recovery room or ICU, the surgery volume will be reduced. The types of cases should be limited to primary lip and palate surgery with no complex surgery. In a large hospital (200 beds) with between four and six operating rooms, a dedicated recovery room and ICU, blood bank and pharmacy, the volume of surgery will be greater and complex secondary procedures can be accomplished.

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PRE-OPERATIVE TEAM ASSESSMENT The pre-operative evaluation should be performed by all the team members on every potential patient and a medical record and photographs taken. The number one priority is to ensure the safety of the patient. The surgeon, pediatrician and anesthesiologist should make the evaluation. The surgeon can decide if the patient’s problem is appropriate, based on the expertise of the team, but the pediatrician and anesthesiologist have the final word regarding medical clearance. Most importantly, a perceptual speech assessment and possibly nasendoscopy should be performed on every patient who presents for correction of secondary speech problems.

TYPE OF SURGERY As indicated previously, the type of surgical facility and its ancillary capabilities will dictate the types of surgical procedures that can be performed. Also the capabilities and training of the team members will influence the scope of procedures that can be performed. In a limited facility, it is probably best to do only primary cases and not to do complex procedures. In a large facility with full service capabilities, primary and secondary surgical procedures can be performed as well as more complex procedures such as orthognathic surgery. Ideally, the goal for patients is to have a well-healed cleft lip with minimal scarring, good nasal correction and a well-repaired and functioning palate without fistula. If we accept the fact that speech is the number one issue, then the priorities will fall into place. Syndromic patients, such as Treacher Collins, with an associated cleft palate can be treated as long as the recovery facilities are adequate. Airway issues seen with Pierre Robin sequence need an ICU for management. Craniofacial patients, such as patients with Crouzon’s syndrome, should be referred to a large medical center in the host country or have special arrangements for them to be treated in the team’s home country. Remember, you do not want to leave a patient with a serious complication that cannot be treated once you return home. In my experience, the pharyngeal flap has a high rate of denasality and is not the best procedure for overseas missions (Pryor et al., 2006). A sphincter pharyngoplasty is a safer approach for velopharyngeal incompetence (VPI) correction with lower risks for denasality (Pryor et al., 2006).

LOCAL SURGEONS The participation of local surgeons with the visiting team is absolutely essential. The visiting team needs to demonstrate how a multidisciplinary team functions and how patients are prioritized. In addition, the local surgeons need to learn how to do the procedures so they can ultimately assume the role of primary surgeon. The goal is to work toward self-sufficiency.

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Teach them a simple basic approach to cleft lip and palate repair that is reproducible. Use the KISS principle! Keep It Simple and Safe. Follow-up care is also an important part of any overseas ‘mission’ and this should be established at a site visit prior to the ‘mission’ (Jacobsen et al., 2005). Suture removal R can be avoided by using Dermabond on lip repairs but some procedures will require suture removal by the local doctor or by the local surgeon you are training. Certain procedures such as Abbe flaps and tongue flaps require a second surgery and should only be done if the local surgeon is capable of performing the second procedure in two to three weeks. ANCILLARY PRE-SURGICAL PROCEDURES When you see the patients at the time of the initial evaluation, most ancillary presurgical procedures are not possible. These include lip taping (Pool, 1995), passive plates, lip adhesions and nasoalveolar molding. In patients with wide unilateral clefts and in bilateral clefts with a protruding premaxilla, lip taping is very helpful in narrowing the cleft gap and in retracting the premaxilla. This is something the local surgeons can do for the patients prior to your arrival. Passive plates and nasoalveolar molding (Grayson et al., 1993) are not practical in the ‘mission’ setting. In special circumstances either a unilateral or bilateral lip adhesion may be appropriate with the plan to complete treatment on the next visit. LIP REPAIR The Millard lip repair (Millard, 1964) is universally accepted as a technique that yields consistently good results because it follows anatomical lines and is relatively easy to reproduce. There have been some modifications (Mohler, 1980; Noordhoff et al., 1995), but basically the key is the initial marking and making the back cut equal to the difference between the two high points of the Cupid’s bow. Muscle dissection with repair and closure of the nasal floor are important complementary parts of the surgery. Doing primary nasal surgery is important as secondary correction will probably not be feasible. Remember, for a lot of these patients this is their only chance. In keeping with this philosophy, we recommend leaving no fistulas. Primary closure of the anterior hard palate in continuity with the nasal floor as performed by the Oslo group (Abyholm et al., 2005) and others using a vomer turnover flap is the best approach (Lehman et al., 1990). This single layer closure of the hard palate simplifies the closure of the remainder of the hard palate and does not interfere significantly with maxillary growth (Lehman et al., 1990; Lehman, 1992). The bilateral cleft lip presents a much more complex situation. Techniques described by Millard and Mulliken both produce reasonably good results (Millard, 1976; Mulliken, 2001). The protruding premaxilla in severe cases presents a difficult situation for the operating surgeon. Pre-surgical taping (Pool, 1995) can reposition the premaxilla over four to six weeks, but this makes surgery at the initial visit impossible. In some situations a lip adhesion may be appropriate. Closure of the anterior hard

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palate and alveolus is not possible at the same time as the lip using bilateral vomer flaps because it may jeopardize the vascular integrity of the premaxilla.

PALATE REPAIR The two-flap palatoplasty initially described by Veau (Veau, 1931) with muscle dissection and posterior repositioning as advocated by Braithwaite (Braithwaite & Maurice, 1968) and Kriens (Kriens, 1969) and refined by Sommerlad (Sommerlad, 2002) is the best approach for overseas ‘missions’. This technique restores normal velopharyngeal anatomy, is reliable and yields excellent surgical and speech outcomes. It is the procedure of choice in my opinion because it is reproducible, safe, and easy to teach. It is also applicable to all types of clefts. The Furlow palate repair (Furlow, 1986; Randall et al., 1986) has received a lot of favorable press but one must remember it is difficult to teach, has a high learning curve, and does not work well with wide clefts. Special care must be taken to address hemostasis of all palate repairs. Bleeding is a serious problem and can be disastrous. Blood bank facilities are usually unavailable at night. If it looks like it’s going to bleed, electrocoagulation of the area is the best rule. Delayed hard palate repair has no place in overseas ‘missions’ (Lehman, 1992; Elander et al., 2005). The claim that delayed hard palate closure results in better facial growth is unsubstantiated (Lehman, 1992; Sommerlad et al., 2005). Palatal surgery undertaken at any time before growth ceases has the potential to cause disturbances in facial growth and dental arches (Mars et al., 2005). This approach violates two basic principles for overseas ‘missions’: (1) it leaves a fistula, which requires a second surgery; (2) it results in poor speech in a high percentage of patients (Lehman, 1992). Secondary velopharyngeal surgery was required in 32% of patients from a recent presentation of the G¨oteborg group (Elander et al., 2005).

LIP AND PALATE TOGETHER When you do a lip repair and you step back and look at the result and take a photo, you have to be pleased, but in the healthy child over six months of age with a complete cleft lip and palate, have you really done them a favor? I think not, because this child will need a second surgery, which he may be unable to get. He may look good, but his poor speech will keep him from getting a job. All healthy children over six months of age who do not live in a situation that is accessible to a second surgery should have the lip and palate repaired in one stage because it is their only chance for good speech. Remember, poor speech may keep the individual from getting a good job reference. This approach is also cost-effective and safe (de May et al., 2005; Gao & Zhang, 2005; Martins et al., 2005). The admonition to do only what you do at home is good advice but one needs to be flexible enough to be creative in special situations. I have personally used this approach and it has been very successful. Adams and associates (Adams et al., 2005)

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have been doing a one-stage repair since 1988 in children over six months and their results compare favorably with that of the Eurocleft results for staged repairs. DO PALATE FIRST AND LIP SECOND In Developing Countries, the nutrition and growth of babies differ greatly from that of Developed Countries. Babies often arrive underweight and anemic and may not be suitable for lip surgery at three months of age. A second surgery for palate repair may not be feasible even at 6–12 months. The usual accepted protocols for cleft management are not suitable. The drop-out rate after lip repair for a second surgery on the palate is high and then the patient is condemned to a life with unacceptable speech. Consideration of these factors prompted Agrawal et al. (2005) to modify their cleft protocol. At six months, the palate is repaired. Three to six months later, the lip and alveolus are repaired. The important point to remember is even if the second surgery is delayed for some reason, the functional outcome is not compromised. Agrawal et al. list the following advantages: (1) no drop-out rate; (2) better followup; (3) anterior fistula rate is low; (4) the repaired palate can be examined at the time of lip repair and fistula can be repaired; and (5) repair of the alveolus is done under direct vision as opposed to repairing the alveolus after lip repair. While I have not used this approach, I totally support it for the situation described. Be flexible and remember that speech is the number one issue. This approach could also be applied on a ‘mission’ where there is not enough operating room time to combine both a lip and palate repair and you want to make sure the family will bring the child back for the second procedure. LIP, PALATE AND PHARYNGOPLASTY In patients over 15 years of age with an unrepaired cleft palate, the chances of a successful speech outcome by repairing the palate alone are very poor. In my opinion, these patients should have the palate repaired along with a pharyngoplasty. This decision should be made in consultation with the speech pathologist but they are almost always in agreement. Saboye et al. (2004) have also published this approach in the Philippines with a very successful outcome for speech. If the lip is also unrepaired, you can do this all together. I have personally used this approach on patients who presented at an older age and who only had one chance to obtain good speech. Your options fall into place when speech is the number one priority.

SECONDARY CLEFT PROBLEMS On every overseas ‘mission’ there are always patients who arrive with complications from previous surgeries. This may be from local surgeons or prior ‘mission’ surgeries. Having the skills to deal with these problems is an important part of the team approach. The following is an approach which has worked.

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VELOPHARYNGEAL INCOMPETENCE (VPI) Correction of velopharyngeal incompetence is the most important aspect of cleft care. A perceptual speech evaluation should be carried out on every child with VPI and, if possible, a nasendoscopy. Following this, a recommendation can be made by the speech pathologist regarding surgery. If surgery is indicated, a pharyngoplasty is preferable because of the lower risk for complications and revisions (Kawamoto, 1995; Pryor et al., 2006).

FISTULAS The incidence of fistulas after palate repair varies but can be as high as 40% (Lehman, 1992, 1995). The occurrence of secondary fistulas represents a failure of surgical repair and is a serious problem in Developing Countries because of the high rate of velopharyngeal incompetence and the lack of resources. The majority of the fistulas are in the hard palate and besides causing VPI, they cause chronic rhinitis and malodor because of the passage of food and liquids into the nose. Closure is important to improve speech and hygiene. In addition, a pharyngoplasty may be a necessary combination for correction of VPI. Failure rates for fistula closure have varied from 12–65% (Lehman, 1992). There are five essential principles to maximize the chances for success: (1) elevation of large palate flaps based on the original incisions; (2) excision of the scarred margins of the fistula; no scar epithelium can be left transversing the fistula site; (3) accurate tension-free closure of the nasal and oral mucosa; (4) use of additional unscarred tissue to close anterior defects or large palate defects (mucobuccal flaps and tongue flaps are most useful); (5) bone graft when indicated but it is not necessary for successful fistula closure. The majority of fistulas seen in Developing Countries need additional tissue for closure and using these principles, one can reduce the recurrence rate to below 10% (Lehman, 1995).

TONGUE FLAP FISTULA CLOSURE A tongue flap for fistula closure is employed when the anterior defect is too large for mucobuccal flaps (Lehman, 1995). In large anterior fistulas the nasal lining can usually be closed utilizing vomerine flaps and then the oral closure is complete with a tongue flap. In Developing Countries, it is important to have good anesthesia and recovery room support before a decision is made to do a tongue flap. In addition, a local surgeon must be able to cut down the flap in two weeks.

SECONDARY RHINOPLASTY Secondary nasal surgery is frequently requested on ‘missions’, but it has a low priority unless there is significant nasal obstruction and the schedule permits it. The approach requires an open technique which most plastic surgeons are capable of performing.

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ALVEOLAR BONE GRAFTS Bone grafting of the cleft maxilla prior to eruption of the permanent cuspid has become an accepted part of the management of patients with clefts involving the maxillary alveolus (Lehman, 1992). The reasons for performing a bone graft are to stabilize the maxillary segments, provide bony support for the teeth adjacent to the cleft, give additional support for the alar base and allow for movement of the cuspid into the lateral incisor position. Typically this procedure is performed at a stage of transitional dentition when the canine root has not fully formed. On overseas ‘missions’, alveolar bone grafting is only possible when there is good dental support to provide preand post-surgical management. To be successful, you need to be working with an established cleft palate team. SCAR REVISION Scar revision has a low priority on most overseas ‘missions’ unless there is a severely deformed lip. Revision can be combined with palate repair. ABBE FLAP Usually this procedure is reserved for severely deformed and deficient cleft lips (Lehman, 1979). Before planning on doing this reconstructive procedure, the surgeon must be in a situation where there is a team or a local surgeon who can perform the secondary cut-down in two weeks. By modifying the original procedure a dynamic Abbe flap can be produced (Lehman, 1979). The plus is that both the cross-lip flap and the cut-down can be performed under local anesthesia. ORTHOGNATHIC SURGERY The most common skeletal deformity in cleft patients is maxillary retrusion (Herber & Lehman, 1993). Correction of this requires a LeFort I osteotomy in the majority of patients. This type of secondary surgery requires a cleft team with established orthodontic services that can prepare the patient pre-operatively and manage the patient post-surgically. Orthognathic surgery also requires experienced anesthesia personnel with recovery room and ICU facilities. The visiting team must bring the rigid fixation equipment because this will not be available in the host country. DISTRACTION Osteotomies followed by distractive osteogenesis have become an integral part of the correction of maxillofacial deformities seen in cleft lip and palate patients (McCarthy et al., 1992). The (KLS-Martin) Rigid External Distraction (RED) appliance allows correction of severe retrusion (>12 mm) (Polley & Figueroa, 1997). As with standard orthognathic procedures, the visiting surgeons must bring the distraction equipment

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and there must be an orthodontist and surgeon who will perform the initial work and the follow-up care. PROSTHODONTIC MANAGEMENT In most overseas ‘missions’, prosthodontic restoration of missing teeth is usually not possible unless there is a dental service and the patient is in a situation where they can return for planning and fabrication. Long-term maintenance is also a problem. Prosthetic speech appliances will be of value for older patients with medical or physical handicaps that prevent a surgical solution. Fabrication requires good interaction between the speech pathologist and the prosthodontist. A prosthesis can assist in speech production as well as obturate fistulae. Again, the issues of long-term management and fabrication make it difficult in the environment of most overseas ‘missions’ to perform this service.

CONCLUSION Working with Rotarian-based ‘missions’ gives one the security of being able to contact individuals in the host country who sincerely support the program. They also organize the local facilities, work on potential patients, and are your local hosts during your stay. They also provide for long-term follow-up. Overseas ‘missions’ provide both direct and indirect contributions to the host country (Salinas, personal communication). The direct contributions include: (1) reduction in the surgical waiting list; (2) help to develop complex procedures such as orthognathic surgery and distraction; (3) donation of orthodontic equipment to get an orthodontic program started; (4) development of non-surgical capabilities such as nasendoscopy. Indirect contributions include: (1) motivation to develop a multidisciplinary team; (2) parents support group; (3) training of young surgeons; and (4) establishment of friendships.

ACKNOWLEDGMENTS This chapter is dedicated to my Chilean friends whom I hope to train out of needing my assistance but not my friendship.

REFERENCES Abyholm F, Ronning E, Kjoll LH, Bollauch FK., Matzen M, Skaare P, et al. (2005) ‘Multidisciplinary management of cleft lip and palate in Oslo, Norway: long-term follow-up of 21 children age 16 born with UCLP’, paper presented at the International Congress of Cleft Lip and Palate, Durban, South Africa.

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Adams TST, Hobby JAE, Phippea G, Richard S & Codier MA (2005) ‘Long-term results of single-stage primary unilateral cleft lip and palate repairs in infancy’, paper presented at the International Congress of Cleft Lip and Palate, Durban, South Africa. Agrawal K, Panda KN & Bolanand S (2005) ‘A modified surgical schedule for cleft lip and palate to suit developing countries’, paper presented at the International Congress of Cleft Lip and Palate, Durban, South Africa. Braithwaite F & Maurice D (1968) ‘The importance of the levator palatini muscle in cleft palate closure’, Br J Plast Surg 21: 60–2. De May A, Swennen G & Malevez C (2005) ‘Long-term results in early simultaneous closure of lip and palate in complete unilateral cleft lip and palate patients’, paper presented at the International Congress on Cleft Lip and Palate, Durban, South Africa. Elander A, Lilja J, Sahlin P & Gudmundsdottin E (2005) ‘Delayed hard palate closure in BCLP patients, surgical procedure and results with G¨oteborg protocol’, paper presented at the International Congress on Cleft Lip and Palate, Durban, South Africa. Furlow LT (1986) ‘Cleft palate repair by double opposing z-plasty’, Plast Reconstr Surg 78: 724–38. Gao J & Zhang L (2005) ‘Applied research in one-time surgeries to repair cleft lip, palate, and alveolus during infancy’, paper presented at International Congress on Cleft Lip and Palate, Durban, South Africa. Grayson BH, Cutting C & Wood R (1993) ‘Preoperative columellar lengthening in bilateral cleft lip and palate’, Plast Reconstr Surg 92: 1422–3. Herber S & Lehman JA (1993) ‘Orthognathic surgery in the cleft lip and palate patients’, Clin Plast Surg 20: 755–68. Jacobsen HC, Hakim SG & Sieg P (2005) ‘Post-op follow-up management in cleft missions’, paper presented at International Congress on Cleft Lip and Palate, Durban, South Africa. Kawamoto HK (1995) ‘Pharyngoplasty revisited and revised’, Oper Tech Plast Reconstr Surg 2(4): 239–44. Kriens O (1969) ‘An anatomical approach to veloplasty’, Plast Reconstr Surg 43: 29–41. Lehman JA (1979) ‘The dynamic Abbe flap’, Ann Plast Surg 3: 401–2. Lehman JA (1992) ‘Cleft palate surgery for the 1990s’, Problems in Plastic and Reconstructive Surgery 2: 76. Lehman JA (1995) ‘Closure of palatal fistulas’, Oper Tech Plast Reconstr Surg 2(4): 255–62. Lehman JA & D’Antonio L (1992) ‘Editorial: Volunteer medical missions’, Cleft Palate J 29: 1. Lehman JA, Douglas BK, Ho WC & Husami TW (1990) ‘One-stage closure of the entire primary palate’, Plastic Reconstr Surg 86: 675–81. Mars M, Batra P & Worrell E (2005) ‘The effects of different timings of palate surgery on the dental arch relationships in Sri Lankan UCLP patients’, paper presented at the International Congress on Cleft Lip and Palate, Durban, South Africa. Martins DM, Martins JL, Lopes LD & Filho NB (2005) ‘Surgical simultaneous repair in unilateral cleft lip, nose and palate in neonatal period: long-term follow-up’, paper presented at International Congress on Cleft Lip and Palate, Durban, South Africa. McCarthy JG, Schreiber J, Karp N, Thorne CH & Grayson BH (1992) ‘Lengthening of the human mandible by gradual distraction’, Plast Reconstr Surg 89: 1–8. Millard DR, Jr (1964) ‘Refinement in rotation-advancement cleft lip technique’, Plast Reconstr Surg 33: 26–38. Millard DR (1976) ‘Bilateral cleft lip repair’, in Cleft Craft, vol. 3, Boston: Little Brown & Co., pp. 51–3. Mohler LR (1980) ‘Unilateral cleft lip repair’, Plast Reconst Surg 80: 511–16.

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Mulliken JB (2001) ‘Primary repair of bilateral cleft lip and nasal deformity’, Plast Reconstr Surg 108: 181–94. Neiman GS & Duncan DS (1986) ‘Perceptions of social and vocational acceptability of adults with facial disfigurement and velopharyngeal insufficiency’, paper presented at ACPA, New York. Noordhoff MS, Chen YR, Chen KT, Hong KF & Lo LJ (1995) ‘The surgical technique for the complete unilateral cleft lip-nasal deformity operative techniques’, Plastic Reconstr Surg 2: 167–74. Polley JW & Figueroa AA (1997) ‘Management of severe maxillary deficiency in childhood and adolescence through distraction osteogenesis with an external adjustable rigid distraction device’, J Craniofac Surg 8: 181–5. Pool R (1995) ‘Tissue mobilization with preoperative lip taping’, Oper Tech Plast Reconstr Surg 2(3): 155–8. Pryor L, LeFaivre JF, Schmidt A, Fox L, Cunningham J, Stoll D, Parker M & Lehman JA (2005) ‘Comparison of speech outcomes and revision rates following pharyngeal flap and pharyngoplasty’, paper presented at ACPA Meeting, Myrtle Beach, SC. Pryor L, Murthy A, Schmidt A, Fox L, Parker M & Lehman JA (2006) ‘Outcomes in pharyngoplasty: a ten year experience’, Cleft Palate J 43: 222–5. Randall P, LaRossa D, Solomon M & Cohen M (1986) ‘Experience with the Furlow double opposing z-plasty for cleft palate repair’, Plast Reconstr Surg 77: 569–76. Saboye J & Chancolle AR (2005) ‘Velopharyngoplasty in an adult patient’, paper presented at the International Congress on Cleft Lip and Palate, Durban, South Africa. Saboye J, Chancolle AR, Tournier JJ & Maurette I (2004) ‘Palatovelopharyngoplasty, an “all in one surgery for adult patients”: our experience in Philippines’, Annales de Chirugie Plastique Esth´etique 49: 261–4. Sommerlad B (2002) ‘A technique for cleft palate repair’, Plast Reconstr Surg 112: 1542–8. Sommerlad B, Mars M, Hay N, Worrell E & Kelkar S (2005) ‘Vomerine flap closure of the hard palate at cleft lip repair. Does it impair maxillary growth?’ paper presented at the International Congress on Cleft Lip and Palate, Durban, South Africa. Spauwen PHM & Chandra PA (2005) ‘Cleft lip and palate treatment in Bangladesh’, paper presented at the International Meeting on Cleft Lip and Palate, Durban, South Africa. Veau V (1931) Division palatine, Paris: Masson.

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Anaesthesia for Cleft Lip and Palate Surgery in the Developing World SARAH HODGES AND ISABEAU WALKER

Editorial comment: This chapter considers the ways anaesthesia may be provided safely using local facilities in a Developing Country. Hodges and Walker have a breadth of experience mainly in rural Africa. They present a comprehensive and flexible approach to anaesthesia, maintaining safety as a core requirement.

INTRODUCTION Surgery for cleft lip and palate in many parts of the world is not available. The incidence is difficult to define, but there is undoubtedly a huge unmet need for surgery in both children and adults. Infants with unrepaired cleft palate have a high mortality due to feeding and respiratory complications. Older children and adults have difficulty integrating into society. Anaesthesia for cleft lip and palate surgery demands good pre-operative assessment and assiduous attention to detail. This is the case in any situation but even more so in Developing Countries where nothing can be taken for granted. Shortages of drugs, equipment and trained personnel make the operating environment hazardous for such specialized surgery. Although conditions in plastic surgical units in some countries are excellent, in many rural hospitals, even the most basic items such as oxygen, intravenous cannulae, drugs and facilities for post-operative care cannot be guaranteed (Hodges et al., 2007).

FACILITIES AND PRIORITIES IN DEVELOPING COUNTRIES STAFFING AVAILABILITY Anaesthesia in Developing Countries is commonly provided by non-medically trained anaesthetists who have undergone a variety of training courses, ranging from up to Management of Cleft Lip and Palate in the Developing World. Edited by Michael Mars, Debbie Sell and C 2008 John Wiley & Sons, Ltd Alex Habel. 

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three years to simply ‘trained on the job’. In many regions in sub-Saharan Africa and elsewhere, there may only be a handful of medically qualified anaesthetists in the country (Hodges et al., 2007). Anaesthesia services are often poorly resourced, being a low priority in areas with significant public health issues such as malnutrition, malaria and HIV/AIDS. Post-operative care on the ward is often largely delivered by parents. There may be few trained nurses, and the children’s wards may be overcrowded and poorly lit at night. Special care needs to be paid to post-operative pain control and instructions regarding observation and charting. Administration of intravenous fluids to a small child in such a setting may be hazardous and impractical. Specialist surgery depends on an integrated team approach, involving different professional skills. This is unlikely to be available in the Developing World. Nursing staff may have no experience of caring for patients after specialized surgery. Protocols used in industrialized countries may not be appropriate and post-operative intensive care or high dependency care is not usually available to manage unexpected complications. Language barriers may further complicate all of these issues. Knowledge of local settings is essential before attempting specialized surgery. The priorities are to undertake surgery on patients who will see benefit from simple interventions, and who will not require sophisticated post-operative care and follow-up, unless concerted efforts are made to provide this (Dupuis, 2004). Nevertheless, many successful teaching programmes have been established, and from small beginnings have led to sustained improvement in local facilities (Ward & James, 1990). ESSENTIAL EQUIPMENT FOR ANAESTHESIA Anaesthetic machines in Developing Countries should be inexpensive, easy to understand and to maintain, robust, able to withstand extreme climatic conditions, serviceable using locally available skills, economical to use, and should not rely on the provision of cylinders or a continuous electricity supply (Eltringham et al., 2003). For these reasons, drawover anaesthesia using ether or halothane is the norm in many rural areas with oxygen supplied by an oxygen concentrator (Dobson, 1993; 1999). Continuous flow anaesthesia may only be possible in larger centres where compressed gases are available (pipeline or cylinder). The Glostavent is an anaesthetic machine that has been specifically designed for use in Developing Countries (Eltringham et al., 2003). It consists of a ventilator, based on the Manley Multivent, drawover apparatus with OMV vaporizer, an air compressor and an oxygen concentrator, with the components mounted on a robust metal frame with two reserve oxygen cylinders. Under normal circumstances, the oxygen concentrator and the air compressor are used as a source of fresh gas – if the electricity supply fails, the reserve oxygen cylinders are turned on to provide back-up oxygen for 20 hours use. The Glostavent has been shown to be cost-effective and to function reliably in adverse conditions. Current versions of the Glostavent ventilator are suitable for use in patients >25 kg; a paediatric version of the Glostavent ventilator is currently under development (Eltringham RJ, personal communication). The standard Glostavent can be used in continuous flow

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mode for children using an anaesthetic T-piece and manual ventilation. An alternative for young infants