BookAnita Kar, editor.
Summary: This book presents the epidemiology of birth defects and their public health and social implications in India. As neglected childhood disorders, birth defects remain invisible in global maternal and child health dialogues. Birth defects services are emerging in India. This book approaches birth defects from a public health perspective, identifying the core functions of a birth defects service. Keeping in mind the complex task of providing multidisciplinary services for children with disabilities and complex medical conditions, the book examines the basic public health activities that have been put in place to address these conditions in India. The book describes birth defects surveillance and the challenges of acquiring accurate and timely data on birth defects against the background of India's mixed health system. It discusses opportunities for prevention of birth defects and describes the structure and function of an emergent genetic service. It explores issues related to an integrated service for children with special healthcare needs, such as screening, early intervention, and rehabilitation. Furthermore, it describes the impact of these conditions on caregivers, including birth defects stigma. This book not only addresses a knowledge gap in the field of public health in India, but also explores the broader issues of services for children with disabilities and disabling conditions in low and low-middle income settings where access to health care is not universal. Given the depth and breadth of its coverage, the book offers an essential resource for birth defects researchers, researchers in the field of maternal and child health, public health/ global health, disability researchers, and researchers from the fields of rehabilitation sciences, nursing and anthropology. This book will be a valuable read for social medicine/community medicine departments, global health courses, and public health schools in India and other low middle-income countries.
Contents:
Intro
Preface
Acknowledgements
Introduction: Birth Defects and Public Health in Low and Middle-Income Countries
Contents
Editor and Contributors
Abbreviations
List of Figures
List of Tables
List of Boxes
Part I A Public Health Approach
1 Birth Defects: A Public Health Approach
The Need for Birth Defects Services in LMICs
Individual, Health and Social Welfare System Impact
Magnitude of Congenital Anomalies
Epidemiological Transition
A Public Health Framework
Birth Defect Surveillance
Prevention of Birth Defects Integrated medical and rehabilitation services
Other Public Health Activities
The World Health Assembly Resolution on Birth Defects
India as an Example of a LMIC
Socio-demographic and Health Indicators
Socio-demographic Index and Epidemiological Transition
Health System
Maternal and Child Health Services
References
2 Some Common Birth Defects
Section I : Common Congenital Anomalies/Malformations
Congenital Heart Defects
Orofacial Clefts
Spina Bifida and Neural Tube Defects
Hydrocephalus, Macrocephaly, Microcephaly Clubfoot (Congenital Talipes Equinovarus)
Developmental Dysplasia of the Hip
Congenital Limb Defects
Polydactyly
Section II : Developmental (Neuromotor) Disabilities
Intellectual Disability
Down Syndrome
Attention-Deficit/Hyperactivity Disorder
Autism Spectrum Disorders
Cerebral Palsy
Congenital Hearing Impairment
Vision Impairment/Blindness
Section III : Common Single Gene Disorders
Hemoglobinopathies
Hemophilia
Muscular Dystrophy
Achondroplasia
Conclusion
References 3 Thalidomide: Understanding the Responsibilities of a Birth Defects Service
Thalidomide
Thalidomide Distribution Across the World
Thalidomide Embryopathy/Syndrome
Health and Social Impact of Thalidomide
Clinical Needs of Children
Impact of Disability: Schooling
Impact on Parents
Health and Welfare Needs with Ageing
The Response to the Thalidomide Tragedy
Health and Social Sector Service Response
Birth Defects Surveillance
Drug Regulation
Abortion Legislation
Compensation and Economic Support
Regulated Reintroduction of Thalidomide Thalidomide in Developing Countries
Lessons for a Birth Defects Service
Zika Virus and the Public Health Response
Congenital Zika Virus Syndrome
Public Health Response
Health System Challenges
Impact on Families
References
Part II Surveillance, Registries and Magnitude
4 Birth Defects Surveillance in India
Background
Birth Defects Surveillance
Birth Defects Surveillance: Factors Affecting Reporting of Prevalence Data
Birth Defects Surveillance in LMICs
Birth Defects Surveillance in India
Summary and Conclusion
References