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Management of CleftLip and Palate in theDeveloping WorldEdited by

MICHAEL MARSGreat Ormond Street Hospital NHS Trust, London

DEBBIE SELLGreat Ormond Street Hospital NHS Trust, London

ALEX HABELGreat Ormond Street Hospital NHS Trust, London

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Management of Cleft Lip and Palatein the Developing World

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ii


Management of CleftLip and Palate in theDeveloping WorldEdited by

MICHAEL MARSGreat Ormond Street Hospital NHS Trust, London

DEBBIE SELLGreat Ormond Street Hospital NHS Trust, London

ALEX HABELGreat Ormond Street Hospital NHS Trust, London

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Copyright C© 2008 John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester,

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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.

iv

http://www.wiley.com


Contents

List of Contributors vii

Foreword xi

Introduction 1Michael Mars, Debbie Sell and Alex Habel

Part I SURGERY AND ANAESTHESIA 5

1 Exporting Plastic Surgical Care to Developing Countries 7Evan S. Garfein, Jacqueline Hom and John B. Mulliken

2 So You Want to Help in a Less Developed Country? 23Bruce Richard

3 Challenges for Cleft Care in the Developing and the Developed World 31Brian Sommerlad

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

5 Anaesthesia for Cleft Lip and Palate Surgery in the Developing World 49Sarah Hodges and Isabeau Walker

Part II APPROACHES TO ORGANIZATION 57

6 Operation Smile 59Bill Magee

7 Rotaplast International: A Study in Medical Volunteerism 69Angelo Capozzi

8 Logistics and Nursing Issues 81Priscilla Jurkovich

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vi CONTENTS

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

Part III FACIAL GROWTH RESEARCH 113

10 Facial Growth in Cleft Lip and Palate Subjects 115Michael Mars

Part IV MEDICAL MANAGEMENT, DISABILITY,PSYCHOLOGICAL AND SOCIAL ASPECTS 125

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

12 Disability, Culture and Cleft Lip and Palate 145Mary Wickenden

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

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

Part V SPEECH AND AUDIOLOGY 177

15 Speech in the Unoperated or Late Operated Cleft Lipand Palate Patient 179Debbie Sell

16 Speech Therapy Delivery and Cleft Lip and Palate in theDeveloping World 193Debbie Sell

17 ENT and Audiology Care for Cleft Palate Patients in theDeveloping World 203Tony Sirimanna

Index 215


List of Contributors

Eileen Bradbury is a consultant psychologist, Associate Fellow of the British Psy-chological Society and Honorary Senior Clinical Lecturer at the University of LondonSchool of Medicine and Dentistry. She has worked for many years with plastic sur-geons and in cleft units in the UK, developing approaches to the psychological careof children, adolescents and adults with clefts. In Uganda, in 2002, she collaboratedwith a surgical team developing ways of assessing individuals prior to cleft repair andmeasuring psychological and social outcomes.

Angelo Capozzi is a plastic surgeon. He was in private practice for 30 years in SanFrancisco. In 1998, he left private practice and became the Chief of Plastic Surgeryat the Shrine Hospital for Children in Sacramento, California. Dr Capozzi has beeninvolved in international service since 1976 and co-founded Rotaplast InternationalInc. in 1992. In 30 years of international service, he and his colleagues have worked in16 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 hasoperated on over 10,000 children and young adults.

Nigel Crisp was Chief Executive of the NHS and Permanent Secretary of the De-partment of Health from 2000 to 2006. He is leading the international task force onscaling up the training and education of health workers in Developing Countries as aconsultant with the Gates Foundation. He published a report for the Prime Ministerin February 2007, Global Health Partnerships: The UK Contribution to Health inDeveloping Countries. He became a member of the House of Lords in 2006.

Evan S. Garfein is a Microsurgery and Reconstructive Surgery Fellow at New YorkUniversity’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 pro-viding comprehensive health-care solutions for the Developing World.

Albert C. Goldberg is a paediatrician in private practice with San Rafael Pedi-atrics in San Rafael, California. For the past 25 years, he has worked in coun-tries such as Argentina, Bolivia, Chile, China, Ecuador, Ethiopia, Honduras, India,Mexico, Venezuela and Vietnam. He is the Director of Pediatrics with RotaplastInternational Inc.

Alex Habel is consultant paediatrician to the North Thames Regional Cleft Unitbased at Great Ormond Street Hospital NHS Trust, London. He has been involvedwith multidisciplinary cleft teams in Sri Lanka, the Maldives and Venezuela and is

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viii LIST OF CONTRIBUTORS

working in partnership with local medical and dental professionals researching intochildren’s growth in Sri Lanka and cleft-related genetic conditions in China.

Sarah Hodges is an anaesthesiologist in the Children’s Orthopaedic Rehabilitationunit in Kampala. She started her training in anaesthesia in 1990 in the UK beforemoving to Uganda to work in a rural hospital in the west of Uganda run by theChurch. She was involved in training nurses, interns and anaesthetic officers. Sheand her husband ran a mobile project for over eight months, repairing cleft lips andpalates throughout Uganda in 1997–98. She returned to the UK in 1998, to upgradeher training in anaesthesia where she obtained her FRCA. She has now returned toUganda with her husband where they are both involved in training. Although based inKampala, they travel around the country doing a variety of reconstructive surgery butespecially cleft lip and palate surgery. She also teaches anaesthetic officers and thepostgraduate trainees in anaesthesia at Mulago Hospital in Kampala and up country.

Jacqueline Hom is a dental student and Presidential Scholar at Harvard Schoolof Dental Medicine, USA. She completed her DMD thesis on the role of traditionalChinese health beliefs on oral health in Beijing, China. In 2007, Jacqueline interned atThe Smile Train, United Nations Development Fund for Women (UNIFEM), and theWorld Health Organization (WHO). Recently, Jacqueline was selected as a Fogarty/Ellison Global Health and Clinical Research Fellow to research oral manifestationsof HIV/AIDS at the GHESKIO Center in Port-au-Prince, Haiti.

Priscilla Jurkovich is a clinical nurse educator at Sanford Health in Sioux Falls, SouthDakota, USA. She has been involved as the nursing coordinator or a staff registerednurse on surgical mission trips since 1993. Recently, Priscilla has been involved withcleft 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 theFaculty of Medicine, University of Colombo, Sri Lanka. He is a former Dean of thesame faculty. He is also a consultant paediatrician at the Lady Ridgeway Hospital forChildren in Colombo. He has been the Co-Director of the Sri Lankan Cleft Lip andPalate Project since its inception when he was the founder Professor of Paediatricsat the University of Ruhuna in Galle. He has over 120 scientific publications tohis credit.

Jim Lehman is a plastic surgeon in Dacron, Ohio, and an ex-President of the AmericanCraniofacial Cleft Lip and Palate Association. He has worked for many years withRotaplast teams in South America.

Bill Magee founded Operation Smile in 1982, and serves as the organization’s ChiefExecutive Officer. Dr Magee was awarded the Hays-Fulbright Scholar Grant from theFranco-American Commission where he studied in France with Dr Paul Tessier. He isDirector of the Institute for Craniofacial and Plastic Surgery in the Children’s Hospitalof 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


LIST OF CONTRIBUTORS ix

Medical School and Professor in the Department of Plastic Surgery at the Universityof Southern California.

Michael Mars is lead consultant orthodontist at the North Thames Regional CleftUnit, based at Great Ormond Street Hospital NHS Trust, London. In 1984, he foundedand continues to direct the Sri Lankan Cleft Lip and Palate Project. He was a jointfounder of the first Sri Lankan Speech and Language Therapy training course at theUniversity of Kelaniya, Colombo. He co-founded CLAPA (the Cleft Lip and PalateAssociation – 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 wellas Sri Lanka. His major research interest is in all aspects of facial growth in cleft lipand palate: its measurement, assessment in cross-centre studies, and the effects ofthe nature and timing of surgery on the outcome of facial morphology. He has beenawarded an honorary D.Sc from Ruhuna University, Sri Lanka, is a visiting professorat the Faculty of Medicine, Peradeniya, and has recently been made an honoraryFellow 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 repairof cleft lip/palate, lectured in England, Italy, Chile, Korea and Taiwan, and workedin Guayaquil and Quito, Ecuador.

Bruce Richard is a consultant plastic surgeon in Birmingham, UK, with a 70% pri-mary cleft surgery commitment. He worked as a plastic surgeon, seconded to theGovernment of Nepal by a Christian aid organization, in a Nepalese government hos-pital with Nepali colleagues for nine years. He helped establish a regional plastic andburns unit, and trained seven national surgeons. He performed 473 cleft operations,and participated in the development of individual and family support for those withcleft and other congenital abnormalities. He facilitated the creation of a speech andlanguage therapy service for the western half of Nepal, a database for clefts with aresearch officer, and completed a randomized controlled trial. After returning to theUK, 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 Or-mond Street Hospital NHS Trust, and Lead Speech and Language Therapist, NorthThames Regional Cleft Service. She was responsible for the speech and language ther-apy 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 theunoperated and late operated patient. She was a joint founder of the first SriLankan Speech and Language Therapy training course at the University of Kelaniya,Colombo. She has also been involved in projects in China, Russia, the Maldives, andMount Abu Rajastan.

Tony Sirimanna is a consultant audiological physician and the lead clinician foraudiology and audiological medicine at Great Ormond Street Hospital NHS Trust,London, where he has worked since 1995. He is a graduate of Colombo Medical


x LIST OF CONTRIBUTORS

Faculty and worked as a consultant ENT surgeon in Sri Lanka before becoming anaudiological physician. He has been involved with developing audiology servicesin Sri Lanka over the past decade and also has been a member of the Sri LankanCleft Lip and Palate Project. He is a member of the International Association ofAudiological Physicians and the International Society of Audiology and has closeworking relationships with audiologists in a large number of Developing Countries.

Brian Sommerlad is consultant plastic surgeon at Great Ormond Street Hospital NHSTrust, London, and ex-Director of the North Thames Regional Cleft Unit. He is onthe Medical Advisory Board of Smile Train, and regularly works with surgical teamsin Bangladesh, Sri Lanka and Uganda. He is a frequent guest speaker at meetings inIndia and was the Millard Lecturer at the Indian Cleft Lip and Palate Society meetingin February 2007.

Isabeau Walker is consultant anaesthetist at Great Ormond Street Hospital NHSTrust, London. She has worked in Sri Lanka and Uganda.

Mary Wickenden teaches on disability and development in the Centre for Interna-tional Health and Development at University College London. She trained and workedas a speech and language therapist and lectured on undergraduate SLT programmesin the UK. She developed an interest in culture and disability and the ways in whichdisability services evolve in development settings. She coordinated and taught on theinnovative SLT training programme at the University of Kelaniya, Sri Lanka. She hasalso undertaken teaching and research projects related to disability in India, Uganda,Iran and Bangladesh. She is currently undertaking a PhD in the anthropology ofdisability at the University of Sheffield.

Parakrama Wijekoon is consultant maxillofacial surgeon and currently Head ofthe Oral and Maxillofacial Surgery Department at the Faculty of Dental Sciences,University of Peradeniya, Sri Lanka. He specializes in cleft lip and palate surgery andis mainly involved with primary surgery. He was the founder of the parent associationof Sri Lankan Cleft Lip and Palate Patients, Sanyathya.


Foreword

This book is about making a difference to people’s lives. It is about dealing with treat-able conditions which blight the lives of many millions. While a cleft lip and palate israrely life-threatening, it causes facial disfigurement (especially if untreated), dam-ages the ability to communicate, and consequentially limits the opportunity for edu-cation, employment and the development of relationships. It diminishes the potentialof the individual and of the society.

In many ways, this is a story of the passion and commitment of individuals whouse 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 verypractical account of what is being done and what can be done. It reviews and critiquescurrent approaches and draws out the particular issues that need to be addressed in theenvironments of Developing Countries – which differ so markedly from each otheras 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 andethical questions – about cultural differences, about how you can or cannot applydifferent standards in different countries, about how even the best intended effortscan harm as well as improve, about motivations and about sustainability. They alsodescribe 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 wellas treatment, but it also requires the development of local health systems alongsidespecific initiatives such as those on HIV/AIDS, maternal care and, of course, themanagement of cleft lip and palate. Many of these initiatives currently operate inisolation and are not linked to local priorities and systems.

This, in turn, means that donors and Developed Countries need to switch the em-phasis from deciding what needs to be done and doing it for people in DevelopingCountries, to supporting them in doing what they themselves decide needs to be done.Ultimately, leadership is local.

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xii FOREWORD

This important book brings together current knowledge and ideas. It offers theinsights and experiences of many authors from different countries and different dis-ciplines. It shows that a great deal is being done to improve the lives of people whosuffer from cleft lip and palate – and provides a valuable platform for doing evenmore in the future.

Nigel CrispHonorary 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 areborn in the poorest parts of the world where resources are severely limited, scarceor non-existent. Just 17,000 are born every year in the richer world. The majorityborn in the poorer countries receive very limited or no treatment at all. To add to thisburden, it should be stated that this occurs on a cumulative annual basis, resulting ina reservoir of many millions of under-treated and untreated individuals. In India andChina alone, this may result in 2.5 million cleft lip and palate subjects for each countryover 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 tobe 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 theDeveloping or Developed World is based on data for infant mortality rates. One in10 children in South Asia dies before their fifth birthday and in Sub-Saharan Africa175 per thousand children die before they are five years old, compared to six perthousand in industrialized countries. Some 10.8 million children die each year, mostfrom preventable causes, and almost all in poor countries – 30,000 children die eachday, one child every three seconds! (Black et al., 2003). Under-nutrition is importantas an underlying cause of child death. It is often associated with infectious diseases,multiple concurrent illnesses, pneumonia and diarrhoea, which remain the diseasesmost associated with child deaths.

All the above naturally raises the question, ‘Should we be concerned about cleft lipand palate?’ In the overall picture of global health-care provision, does cleft lip andpalate matter? It is rarely life-threatening and, indeed, some consider it to be merelya cosmetic problem.

Throughout this book the terms Developed and Developing Countries/World willbe used. The terminology used by the Developed World for the Developing Worldis itself confusing: ‘The Poorest Countries’, ‘the Under-developed World’, ‘the Non-industrialized Countries’, ‘the Southern Hemisphere’, ‘the Majority World’, ‘theThird World’, ‘Less Economically Developed Countries’ are just some of the la-bels used to attempt to gain some understanding of the issues involved. Many of these

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


2 MANAGEMENT OF CLEFT LIP AND PALATE

Developing Countries consider these terms patronizing and dismissive, perhaps withsome justification. For example, modern surgery in the West is considered to havebeen developed by Hunter just 200 years ago, whereas Sushruta in India wrote textson surgery, infection control and the use of silk sutures over 2500 years ago. Never-theless, it is clear that some countries are disproportionately rich and others poor andthis at least provides a good starting point for evaluation of an investigation of howthe two might share finite resources.

The question is further compounded by a common misconception that the Devel-oping World is uniform. Africa, for example, is often referred to as though it were asingle country. Neighbouring countries are often grouped together, for example, Indiaand 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 is63.4 years compared to 75.4 years in Sri Lanka and 79.9 years in the UK. Under-fivemortality in India per thousand is 95 compared to 22.6 in Sri Lanka and 6.5 in theUK. These figures are worse for Sub-Saharan Africa where under-five mortality insome countries is 200 per thousand.

Given that so many programmes of care from the Developed World to the Devel-oping World for cleft lip and palate are undertaken by a variety of individuals andorganizations, it is clear that at least in the former, cleft lip and palate is accordedsome degree of priority for remedial care. A further question now arises: should thosein rich countries determine the health-care priorities for poor countries where perhapsthe more pressing needs of basic survival pertain? Should they be able to impose theirsystems of care by virtue of their wealth? In extreme circumstances, does the qualityof life have a value when life itself is so frequently challenged?

Clinicians and politicians in Developing Countries are increasingly recognizingthat the large reservoirs of untreated cleft lip and palate cases in their populations areactually a drain on their economic well-being and a blight on the lives of millions ofpeople. At the basic level of surgical care alone, the cost of repair is small, requiringlittle in the way of sophisticated technological equipment. Those treated may becomeaccepted members of society, marry, gain an education and employment and attaintheir full social and economic potential which is denied to those who do not haveaccess to treatment.

That both the Developed World and the Developing World are concerned is demon-strated by the large number of collaborative programmes of care presently being under-taken. These programmes in themselves raise many more questions, often more thanthey 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 ‘mis-sions’, 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 ‘headcounts’ – the number of clefts per trip. In an attempt to bring ‘healing’ for a varietyof congenital and acquired conditions, organizations such as ‘Mercy Ships’ providesurgery performed by non-specialist teams. These are prepared to take on many rela-tively low-risk procedures but may lack the essential skills to produce an improvementin life experience resulting from poorly performed surgery. There is often little effort


INTRODUCTION 3

to involve local surgeons who are left to manage post-operative problems once thevisitors have departed. Many teams provide no continuity of care, without offeringhelp in speech, dental care, orthodontics or secondary surgical procedures (Mulliken,2004). Some teams are politically or religiously motivated, often a cause of concernwithin the host country. Some take no responsibility for convalescence and the clini-cians involved are often very junior with no experience in their own countries of cleftlip and palate work (Natsume, 1998). Visiting surgeons have sometimes used thesemissions to train their junior staff, and the safety standards have not always been thosethat are required in their home countries (Dupuis, 2004). Deaths have been reported inwhich full postmortem investigations would have taken place in the Developed World.‘Surgical safaris’ and ‘Parachute programmes’ have been the terms used by critics ofsuch visits. Many have argued that the benefits have often been for the visitors ratherthan the visited. On the other hand, many programmes of care are truly based on theaims of treatment, teaching and training, leading to the goal of self-sustaining careby the host countries.

There is a dearth of research into what treatment practices actually work best inthe Developing World. The simple export of the same policies of care as providedin the wealthier countries may fail to deliver equivalent results in the DevelopingWorld. Where there are no local facilities whatsoever, the goals and aspirations ofvisiting teams will need to reflect this. Speech therapy and orthodontic provision isoften absent even if basic surgery is possible. Palate surgery for older patients mayoften provide no help for speech and be a misplaced use of precious resources. TheDeveloped World continues to export and promote treatments (Grayson et al., 1999),the benefits of which are questioned, even in their own countries. Non-governmentalorganizations (NGOs) are significant contributors to the provision of health care,especially in the poorest countries in the Developing World. However, despite theirfinancial power, which some governments may interpret as being politically motivatedor religiously slanted, they also compete for available local resources.

Clearly, there are many questions and fewer answers to the problems that besetthe provision of cleft lip and palate treatment in the Developing World. This bookattempts to address these questions. All the contributors have considerable experiencein their own countries and in the Developing World. They do not always agree. Thereis no ‘right answer’. The conditions differ from one country to another and withinany one country. Many, including the editors, will admit to having made mistakes intheir approach to cleft care in their efforts in the Developing World. They have beenguilty of ethnocentricity, patronizing and of being non-cost-effective. They try, butbecause 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 whatneeds to be done’ (Lancet, 2003). With goodwill and understanding betweenthe Developing and the Developed World it should be possible to work towardseliminating the scourge of untreated cleft lip and palate from the world. This multi-author and multidisciplinary book tries to move towards that goal. The managementof cleft lip and palate in the Developing World is and will continue to be a challenge



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

REFERENCES

Black RE, Morris SS & Bryce J (2003) ‘Where and why are 10 million children dying everyyear?’ Lancet 361: 2226–34.

Dupuis CC (2004) ‘Humanitarian missions in the Third World: a polite dissent’, Plast ReconstrSurg 113: 433–5.

Grayson BH, Santiago PE, Brecht LE & Cutting CB (1999) ‘Presurgical nasoalveolar mouldingin 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.

JWBK113-01 JWBK113-Mars February 7, 2008 13:28 Char Count= 0

Part I Surgery andAnaesthesia

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1 Exporting Plastic Surgical Care toDeveloping Countries

EVAN S. GARFEIN, JACQUELINE HOM AND JOHN B. MULLIKEN

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

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 pay-

ment 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

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



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 set-

tings that attract surgical teams, past models of exporting care to Developing Coun-

tries, 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 prob-

lems 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 trav-

eling 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


EXPORTING PLASTIC SURGICAL CARE TO DEVELOPING COUNTRIES 9

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, home-

grown 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 responsi-

ble patient care in this setting has been underscored in the literature and is ad-

dressed elsewhere in this chapter. The major challenge that faces the surgeon af-

ter 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, infor-

mation 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



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 oper-

ate 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 state-

ment, 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, ther-

apists, 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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