Birth Defects In South-east Asia A Public Health Challenge SITUATION ANALYSIS SEA-CAH-13 Distribution: General Birth Defects in South-East Asia A public health challenge Situation Analysis Acknowledgement The collaboration and support provided by the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC) Atlanta, USA is gratefully acknowledged. The contribution of Dr I.C. Verma (Director Center of Medical Genetics, Sir Ganga Ram Hospital) and Dr Madhulika Kabra (Professor, Division of Genetics, Department of Paediatrics, All India Institute of Medical Sciences) for literature review and preparation of the initial manuscript of the document are acknowledged. The paintings used in this document are made by Mr Nitin, who is afflicted with Down syndrome. World Health Organization 2013 All rights reserved. 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The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not men- tioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by the World Health Organization to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall the World Health Organization be liable for damages arising from its use. This publication does not necessarily represent the decisions or policies of the World Health Organization. Printed in India Contents Abbreviations 1. Introduction 1 2. Definition,auses c and types of birth defects 3 3. Global scenario 5 4. Regional scenario 9 5. Country scenarios 14 • Bangladesh 15 • Bhutan 25 • Democratic People’s Republic of Korea 31 • India 35 • Indonesia 49 • Maldives 57 • Myanmar 63 • Nepal 71 • Sri Lanka 79 • Thailand 87 • Timor-Leste 99 6. Summary 103 7. References 113 ABBREVIATIONS AIIMS All India Institute of Medical Sciences, New Delhi ANC Antenatal care ART Assisted reproductive technology BCG Bacillus Calmette–Guérin CMV Cytomegalovirus CRS Congenital rubella syndrome CVD Cardiovascular diseases DCR Day-care room DQ Development quotient DTP Diphtheria-tetanus-pertussis G6PD Glucose-6-phosphate dehydrogenase GDP Gross domestic product Hb Haemoglobin Hb CS Haemoglobin Constant Spring HBV Hepatitis B virus Hib Haemophilus influenzae type b HKI Helen Keller International HMIS Health management information system ICD10 Tenth Revision of the International Classification of Diseases ICMR Indian Council of Medical Research IDD Iodine deficiency disorder IGMH Indira Gandhi Memorial Hospital, Male IMCI Integrated management of childhood illness IMR Infant mortality rate LMIC Low- and middle-income countries MDG Millennium Development Goal MMR Measles-mumps-rubella MOD March of Dimes NBE National Board of Examinations, India NE Neonatal encephalopathy NGO Nongovernmental organization NIP National Immunization Programme NPD Neonatal-perinatal database NTD Neural tube defects PEM Protein energy malnutrition PKU Phenylketonuria RMNCH Reproductive, maternal, newborn and child health RT-PCR Reverse transcription polymerase chain reaction SEA South-East Asia SEAR WHO South-East Asia Region TGP Total goiter prevalence TGR Total goiter rate UCI Universal child immunization UNESCAP United Nations Economic and Social Commission for Asia and the Pacific UNFPA United Nations Population Fund UNICEF United Nations Children’s Fund USA United States of America USAID United States Agency for International Development WHA World Health Assembly WHO World Health Organization X-ALD X-linkedadreno-leukodystrophy 1. INTRODUCTION There has been a significant decline in integrating effective interventions infant and childhood mortality rates in most that include comprehensive guidance, countries in the past two decades. This information and awareness-raising has primarily been due to extensive and to prevent birth defects, and care for successful use of immunization, control of children with birth defects into existing diarrhoeal disorders, acute respiratory tract maternal, reproductive and child health infections and improvement in health-care services and social welfare for all services through a focus on primary health individuals who need them; care. As a consequence, birth defects are • record surveillance data on birth defects responsible for a greater proportion of infant as part of national health information and childhood mortality (World Bank, 1993). systems; Indeed in developed countries birth defects • develop expertise and build capacity on cause 30–35% of perinatal, neonatal and the prevention of birth defects and care childhood mortality. In developing countries, of children with birth defects; they contribute to about 5–7% of mortality, • strengthen research and studies on and this proportion is progressively increasing. aetiology, diagnosis and prevention In 2010, the World Health Assembly (WHA), of major birth defects and to promote vide Executive Board agenda items EB125, 126 international cooperation in combating and 127 (WHO, 2010a), expressed concern them; and about the high number of stillbirths and • promote the collection of data on neonatal deaths occurring worldwide, and the global burden of mortality and the large contribution of neonatal mortality morbidity due to birth defects, and to under-five mortality. It recognized the to consider broadening the groups of importance of birth defects as a cause of congenital abnormalities included in stillbirths and neonatal mortality, and that the the classification when the International attainment of MDG 4 on reduction of child Statistical Classification of Diseases mortality will require accelerated progress and Related Health Problems (Tenth in reducing neonatal mortality, including Revision) is revised. prevention and management of birth defects. It was recommended that Member States should The Secretariat was therefore requested by be supported in developing national plans the Member States to carry out the following for implementation of effective interventions activities to: to prevent and manage birth defects within • raise awareness among all relevant their national maternal, newborn and child stakeholders, including government health plans. Support should also include officials, health professionals, civil strengthening health systems and primary care society and the public, about the (including improved vaccination coverage such importance of birth defects as a cause as for measles and rubella), food fortification of child morbidity and mortality; and other preventive strategies of birth defects, • set priorities, commit resources, promoting equitable access to such services, and develop plans and activities for and strengthening surveillance of birth defects. 1| These important recommendations in the (LMIC), the burden of birth defects is much 2010 resolution WHA63. 17 (WHO, 2010a & higher than in high-income countries. This is b), form the basis of initiatives by the WHO due to sharp differences in maternal health Office for the South-East Asia Region for the and other significant risk factors, including prevention of birth defects. poverty, a high percentage of older mothers (in some countries), a greater frequency of Why have birth defects not received consanguineous marriages etc. In LMIC, birth the attention they deserve to date from defects cause a tremendous drain on national policy-makers, funding organizations and resources, and urgent focus in these countries health-care providers? This is probably due should therefore be on prevention. The to the misperception that these disorders urgency is clear at the sight of a child bound are rare. In fact there is no nationally to a wheelchair because of being born with representative data in any of the Member spina bifida, or a child with mental retardation States on the magnitude of birth defects and due to hypothyroidism, or congenital rubella, their contribution to foetal loss and newborn or a family with two children with muscular or infant mortality. dystrophy. Every child who has a preventable birth defect is a failure of medical care and Another myth is that birth defects require public health systems that ignore available expensive and high technology interventions preventive measures. The failure to prevent for their care and prevention that are beyond birth defects is caused, in large measure, by the health budgets of low- and middle-income the lack of organized effort and political will countries