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Suggested Citation:"Front Matter." Institute of Medicine. 2003. Reducing Birth Defects: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10839.
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Suggested Citation:"Front Matter." Institute of Medicine. 2003. Reducing Birth Defects: Meeting the Challenge in the Developing World. Washington, DC: The National Academies Press. doi: 10.17226/10839.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

REDUCING BIRTH DEFECTS MEETING THE CHALLENGE IN THE DEVELOPING WORLD Committee on Improving Birth Outcomes Board on Global Health Judith R. Bale, Barbara J. Stoll, and AJetokunbo O. Lucas, Editors INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

THE NATIONAL ACADEMIES PRESS · 500 Fifth Street, N.W. · Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the Na- tional Academy of Sciences, the National Academy of Engineering, and the Institute of Medi- cine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. Support for this project was provided by the March of Dimes. The views presented in this report are those of the Institute of Medicine Committee on Improving Birth Outcomes and are not necessarily those of the funding agencies. Library of Congress Cataloging-in-Publication Data Reducing birth defects: meeting the challenge in the developing world / Committee on Im- proving Birth Outcomes, Board on Global Health; Judith R. Bale, Barbara J. Stoll, and Adetokunbo O. Lucas, editors. p. ;cm. Includes bibliographical references. ISBN 0-309-08608-6 (pbk.), 0-309-52793-7 (PDF) 1. Abnormalities, Human Developing countries Prevention. 2. Maternal health services- Developing countries. 3. Pregnancy Complications Developing countries Prevention. 4. Infants (Newborn) Diseases Developing countries Prevention. 5. Infants (Newborn)- Developing countries Mortality Prevention. [DNLM: 1. Abnormalities etiology. 2. Abnormalities prevention &control. 3. Develop- ing Countries. 4. Prenatal Care. 5. Prenatal Diagnosis. QS 675 R321 2003] I. Bale, Judith R. II. Stoll, Barbara J. III. Lucas, Adetokunbo O. IV. Institute of Medicine (U.S.). Committee on Improving Birth Outcomes. RG627.2.D44R438 2003 362.19'832'091724 dc22 2003015499 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www. iom.edu. Copyright 2003 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

"I(nowing is not enough; we midst apply. Willing is not enough; we midst do." Goethe .............. ....... ... ............ ........ - INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Shaping the Future for Health

THE NATIONAL ACADEMIES Advisers to the Nation on Stiente, Engineering, and Meditine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Acad- emy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of ~ . sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engi- neers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineer- ing programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is presi- dent of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy's purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Coun- cil is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www. nations l-academies.org

COMMITTEE ON IMPROVING BIRTH OUTCOMES ADETOKUNBO O. LUCAS (Co-chairJ, Professor of International Health, Nigeria BARBARA l. STOLL (Co-chairJ, Emory University School of Medicine, Atlanta, GA ANNA ALISIAHBANA, University of Pajajaran, Bandung, Indonesia AB HAY BANG, Society for Education, Action & Research in Community Health, Gadchiroli, India LAURA CAULFIELD, Johns Hopkins University School of Public Health, Baltimore, MD ROBERT GOLDENBERG, University of Alabama at Birmingham, Birmingham, AL MARGE KOBLINSKY, Mother Care/John Snow, Arlington, VA MICHAEL KRAMER, McGill University, Montreal, Quebec, Canada AFFETTE MCCAW-BINNS, University of the West Indies, Jamaica, WI KUSUM NATHOO, University of Zimbabwe Medical School, Harare, Zimbabwe HARSHAD SANGHVI, Maternal and Neonatal Health Program, JHPIEGO Corp., Baltimore, MD JOE LEIGH SIMPSON, Baylor College of Medicine, Houston, TX STAFF JUDITH BALE, Board and Study Director (until October 2002) MAMATA KAMAT, Consultant ALISON MACK, Consultant JASON PELLMAR, Project Assistant LAURIE SPINELLI, Project Assistant (until July 2002) v

BOARD ON GLOBAL HEALTH DEAN MADISON (ChairJ, Director, Program on International Health, Education, and Environment, University of California at Los Angeles, and the World Health Organization, Geneva, Switzerland YVES BERGEVIN, Chief, Health Section, UNICEF, New York, NY DONALD BERWICK, President and CEO, Institute of Health Care Improvement, Harvard Medical School, Boston, MA PATRICIA DANZON, Professor, Health Care Systems Developmen University of Pennsylvania, Philadelphia, PA If , RICHARD FEACHEM, Executive Director, The Global Fund, Geneva, Switzerland NOREEN GOLDMAN, Professor, Woodrow Wilson School of Public and International Affairs, Princeton University, Princeton, N} JEFFREY KAPLAN, Vice President for Academic Affairs, Emory University, Atlanta, GA GERALD KEUSCH, Director, Fogarty International Center, National Institutes of Health, Bethesda, MD MARGARET HAMBURG, Vice President for Biological Programs, Nuclear Threat Initiative, Washington, DC ADEL MAHMOUD, President, Merck Vaccines, Whitehouse Station, N} JOHN WYN OWEN, Secretary, Nuffield Trust, London, United Kingdom SUSAN SCRIMSHAW, Dean, School of Public Health, University of Illinois at Chicago, Chicago, IL DAVID CHALLONER (IOM Foreign Secretary), Vice President for Health Affairs, Emeritus, University of Florida, Gainesville, FL v'

REVIEWERS This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the NRC's Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evi- dence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the delibera- tive process. We wish to thank the following individuals for their review of this report: 0.0. AKINYANJU, University of Lagos, Lagos, Nigeria ROBERT L. BRENT, Thomas Jefferson University Medical College, Alfred duPont Hospital for Children, Wilmington, DE MAUREEN DURKIN, Joseph L. Mailman School of Public Health, Columbia University, New York, NY HATEM EL-SHANTI, Jordan University of Science and Technology, Irbid, Jordan MIME L. FRIAS, University of Southern Florida, Tampa, FL LUIS HEREDERO, Centro Nacional de Genetica Medica, Havana. Cuba ZHU LI, Beijing Medical University, Beijing, People's Republic of China VICTOR B. PENCHASZADEH, Beth Israel Medical Center, New York, NY DENIS VIL PORN, South African Johannesburg, South Africa P. WASANT, Mahido! University, Bangkok, Thailand PAUL WISE, Boston Medical Center, Boston University, Boston, MA Institute of Medical Research, Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by ELAINE L. LARSON, Columbia University, New York, New York, and by MARY ELLEN AVERY, Children's Hospital, Boston, Massachusetts. Appointed by the National Research Council and Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution. . . v''

Acknowledgments The Institute of Medicine acknowledges the committee for undertaking this report and guiding it to completion while also developing the more compre- hensive report, Improving Birth Outcomes: Meeting the Challenge in the Developing World. The successful completion of this report has required the input of many experts. The committee thanks the researchers and public health profes- sionals who presented papers and provided insights at the workshop held in conjunction with the first committee meeting. The committee is grateful to Toe Leigh Simpson, committee member; Eduardo Castilla, Brazil; and Arnold Christianson, South Africa, for drafting background papers that provided the starting point for this report. The committee also thanks Nicholas Wald and Bernadette Modell, United Kingdom; Enrique Gadow, Brazil; Judith Hall, Canada; and Godfrey Oakley, Noreen Goldman, and Maureen Durkin, United States, for their technical reviews and suggestions for the report. Material on rehabilitation drafted by Maureen Durkin, Nalia Khan, Molly Thorburn, and Gregory Powell for an earlier National Acad- emies report was invaluable for this study as well. The committee would like to thank staff and consultants in the Institute of Medicine whose contributions were instrumental to developing and pro- ducing this report: Judith Bale, who coordinated committee and other ex- pert input, Pamela Mangu, who organized the first committee meeting, Alison Mack, who transformed report text, Mamata Kamat for dedicated research on the prevalence of specific birth defects, and Laurie Spinelli, Jason Pelimar, and Shira Fischer for their superb support, each at a differ- ent stage of the report. Also valuable in the early development of the report was research provided by Stacey Knobler, Rose Martinez, and Marjan Najafi, and the assembling of references by summer interns Kevin Crosby Nix

x A CKNO VDLED GMENTS and Maria Vassileva. Appreciation is extended to Rona Briere for her ex- pert editing of the report. Other staff who were instrumental in the final stages of this report include Bronwyn Schrecker, Janice Mehier (National Academies), Jennifer Otten, Jennifer Bitticks, and the NAP production staff. Andrea Cohen is acknowledged for her careful monitoring of study finances.

Contents PREFACE EXECUTIVE SUMMARY 1 INTRODUCTION Magnitude of the Problem, 12 Increase in the Importance of Birth Defects with Decreasing Infant Mortality, 14 Reducing Birth Defects in Countries with Low Infant Mortality, 15 Social, Economic, and Health Context, 17 Study Purpose, 18 Study Approach, 19 Organization of the Report, 20 References, 20 IMPACT AND PATTERNS OF OCCURRENCE Genetic Birth Defects, 23 Birth Defects of Environmental Origin, 35 Birth Defects of Complex and Unknown Origin, 51 Conclusion, 54 References, 55 3 INTERVENTIONS TO REDUCE THE IMPACT OF BIRTH DEFECTS Basic Reproductive Care, 69 Low-Cost Preventive Strategies, 71 x' · · ~ X111 1 11 22 68

. . xt! Provision of Improved Care, 80 Screening for Genetic Disorders, 92 National Coordination, Surveillance, and Monitoring, 110 Conclusion, 112 References, 113 4 INCORPORATING CARE FOR BIRTH DEFECTS INTO HEALTH CARE SYSTEMS Strategies for Addressing Birth Defects, 122 National Policy and Leadership, 129 Conclusion, 133 References, 134 APPENDIXES A PREVALENCE OF BIRTH DEFECTS Birth Defects, 136 Down Syndrome, 144 Thalassemia, 150 Sickle Cell Disease, 154 Glucose-6-Phosphate Dehydrogenase Deficiency, 158 Oculocutaneous Albinism, 164 Cystic Fibrosis, 168 Phenylketonuria, 170 Neural Tube Defects and Hydrocephalus, 174 Congenital Heart Disease, 184 Cleft Lip and/or Cleft Palate, 192 Talipes, 202 Developmental Dysplasia of the Hip, 206 References, 212 B COMMITTEE BIOGRAPHIES GLOSSARY ACRONYMS INDEX CONTENTS 122 135 220 227 239 241

Preface We have no trust more sacred than our children and no duty more important than providing for their health. The twentieth century saw tre- mendous improvements in overall child survival and well-being, yet this transformation has not been shared by all. The suffering of millions of infants who endure poverty and conflict is compounded by illness and debilitating birth defects. Even in low-resource settings, effective and af- fordable interventions can reduce the incidence and consequences of several major birth defects. The focus of this report is on identifying how and where such successes can be achieved in developing countries. It is estimated that each year, more than 4 million children are born with serious birth defects that cause death or lifelong disability for the patient and hardship for entire families. Stigma, discrimination, social iso- lation, lost hopes and opportunities, and the daily stresses associated with lifelong impairment add to the physical and economic burdens. To reduce the impact of birth defects, national health officials and policy makers may need first to recognize the enormous personal and soci- etal consequences imposed by these conditions, much as they have recog- nized the burden of infectious diseases and acted to control them. Informa- tion on the prevalence and burden of disease caused by birth defects is scant or totally lacking in most developing countries. Such knowledge can lead to better diagnosis and treatment of birth defects, as well as to systems of care that are tailored to meet priority needs. The committee's findings and rec- ommendations target birth defects in developing countries, where resources are limited and the needs are great. This report is intended to help focus attention on providing pregnant women the care they need and children the best possible start in life. x'''

REDUCING BIRTH DEFECTS MEETING THE CHALLENGE IN THE DEVELOPING WORLD

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Each year more than 4 million children are born with birth defects. This book highlights the unprecedented opportunity to improve the lives of children and families in developing countries by preventing some birth defects and reducing the consequences of others. A number of developing countries with more comprehensive health care systems are making significant progress in the prevention and care of birth defects. In many other developing countries, however, policymakers have limited knowledge of the negative impact of birth defects and are largely unaware of the affordable and effective interventions available to reduce the impact of certain conditions. Reducing Birth Defects: Meeting the Challenge in the Developing World includes descriptions of successful programs and presents a plan of action to address critical gaps in the understanding, prevention, and treatment of birth defects in developing countries. This study also recommends capacity building, priority research, and institutional and global efforts to reduce the incidence and impact of birth defects in developing countries.

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