Skip to main content
SpringerLink
Log in

Birth Defects: A Public Health Approach

  • Chapter
  • First Online:
Birth Defects in India

  • 355 Accesses

Abstract

Birth defects and developmental disabilities consist of several debilitating clinical disorders that cause disabilities and lifelong medical conditions in children. Down syndrome, congenital heart defects, spina bifida, autism cerebral palsy and congenital hearing impairment are some common examples. Birth defects and developmental disabilities are neglected childhood conditions in low- and middle-income countries (LMICs), with limited medical and rehabilitation services. Survivors have multiple healthcare needs that include lifelong medical care and physical rehabilitation. Social welfare measures like supplemental income, access to appropriate education and employment need to be provided. Interventions to foster the independence of children and adults with disabilities and disabling conditions, and implementation of regulations to ensure social inclusion and protection of rights of children with disabilities are other essential activities. Providing care for children with such special healthcare needs is a challenge for health services across the world. For LMICs, this challenge is significantly pronounced as access to health care is not universal, health systems are under-funded, health service needs are large, and disability services and services for chronic paediatric disorders are unavailable or of limited availability. This article approaches birth defects and developmental disabilities from a public health/health service perspective. It begins by placing the humanitarian, demographic and epidemiological arguments that demand the introduction of birth defects services as integral components of maternal and child health services of LMICs. The article then presents the public health framework, discussing key issues of birth defects surveillance, prevention, care and other essential activities. The final section of the article describes the context, that is the health indicators and services in India, which form the background within which a holistic birth defects service needs to be planned, developed and implemented.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 89.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 119.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 119.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Christianson A, Howson CP, Modell B (2006) March of Dimes Global Report on Birth Defects: the hidden toll of dying and disabled children. March of Dimes Birth Defects Foundation, White Plains, New York

    Google Scholar 

  2. World Health Organization (2015) Birth defects surveillance: a manual for programme managers. In: Birth defects surveillance: a manual for programme managers. Available via https://www.who.int/nutrition/publications/birthdefects_manual/en/

  3. Boyle CA, Cordero JF (2005) Birth defects and disabilities: a public health issue for the 21st century. Am J Public Health 95:1884–1886

    Article  Google Scholar 

  4. McPherson M, Arango P, Fox H et al (1998) A new definition of children with special health care needs. Pediatrics 102(1):137–139

    Article  CAS  Google Scholar 

  5. Lawn JE, Blencowe H, Pattinson R, Committee LSSS et al (2011) Stillbirths: Where? When? Why? How to make the data count? Lancet 377(9775):1448–1463

    Article  Google Scholar 

  6. Lemacks J, Fowles K, Mateus A, Thomas K (2013) Insights from parents about caring for a child with birth defects. Int J Environ Res Public Health 10(8):3465–3482

    Article  Google Scholar 

  7. Farrell M, Corrin K (2005) The stigma of congenital abnormalities. In: Mason T, Carlisle C, Watkins C, Whitehead E (eds) Stigma and social exclusion in healthcare. Routledge, pp 69–80

    Google Scholar 

  8. Murphy NA, Christian B, Caplin DA, Young PC (2007) The health of caregivers for children with disabilities: caregiver perspectives. Child Care Health Dev 33(2):180–187

    Google Scholar 

  9. Neely-Barnes SL, Dia DA (2008) Families of children with disabilities: a review of literature and recommendations for interventions. J Early Intensive Behav Interv 5(3):93–107

    Article  Google Scholar 

  10. Zuurmond M, Nyante G, Baltussen M et al (2019) A support programme for caregivers of children with disabilities in Ghana: understanding the impact on the wellbeing of caregivers. Child Care Health Dev 45(1):45–53

    Google Scholar 

  11. Whitney DG, Shapiro DN, Peterson MD, Warschausky SA (2019) Factors associated with depression and anxiety in children with intellectual disabilities. J Intellect Disabil Res 63(5):408–417

    Article  CAS  Google Scholar 

  12. Farr SL, Oster ME, Simeone RM, Gilboa SM, Honein MA (2016) Limitations, depressive symptoms, and quality of life among a population-based sample of young adults with congenital heart defects. Birth Defects Res A Clin Mol Teratol 106(7):580–586

    Article  CAS  Google Scholar 

  13. Wehby GL, Cassell CH (2010) The impact of orofacial clefts on quality of life and healthcare use and costs. Oral Dis 16(1):3–10

    Article  CAS  Google Scholar 

  14. Jones L, Bellis MA, Wood S et al (2012) Prevalence and risk of violence against children with disabilities: a systematic review and meta-analysis of observational studies. Lancet 380(9845):899–907

    Article  Google Scholar 

  15. Cruz-Inigo AE, Ladizinski B, Sethi A (2011) Albinism in Africa: stigma, slaughter and awareness campaigns. Dermatol Clin 29(1):79–87

    Article  CAS  Google Scholar 

  16. Dharmarajan S, Phadnis S, Gund P, Kar A (2014) Out-of-pocket and catastrophic expenditure on treatment of haemophilia by Indian families. Haemophilia 20(3):382–387

    Article  CAS  Google Scholar 

  17. Dharmarajan S, Phadnis S, Gund P, Kar A (2012) Treatment decisions and usage of clotting factor concentrate by a cohort of Indian haemophilia patients. Haemophilia 18:27–29

    Article  Google Scholar 

  18. Health Resources and Service Administration Maternal and Child Health Bureau NS-CSHN. Chartbook 2009–2010 illustrated findings from the national survey of children with special health care needs. Available at https://mchb.hrsa.gov/cshcn0910/population/pages/pc/pcih.html. Accessed Aug 2018

  19. National Birth Defects Prevention Network (2004) NDPN guidelines for conducting birth defects surveillance article 3 case definition rev. 06/04. Available via https://www.nbdpn.org/current/resources/sgm/Ch_3_Case_Definition6-04%20no%20app.pdf. Accessed 21 Mar 2018

  20. EUROCAT European congenital anomalies registry? Available via https://eu-rd-platform.jrc.ec.europa.eu/eurocat. Accessed Mar 2018

  21. Latin American collaborative study of congenital malformations (ECLAMC)? Available via https://www.eclamc.org/eng/index.php. Accessed Mar 2018

  22. World Health Organization Regional Office for South-East Asia (2015) Neonatal–perinatal database and birth defects surveillance report of the regional review meeting, New Delhi, 19–21 Aug 2014. Available via https://apps.searo.who.int/PDS_DOCS/B5227.pdf. Accessed Mar 2018

  23. International clearinghouse for birth defects surveillance and research? Available via https://www.icbdsr.org/. Accessed Mar 2018

  24. World Health Organization congenital anomalies facts sheets? Available via https://www.who.int/en/news-room/fact-sheets/detail/congenital-anomalies. Accessed Mar 2018

  25. Modell B, Darlison MW, Malherbe H, Moorthie S, Blencowe H, Mahaini R, El-Adawy M (2018) Congenital disorders: epidemiological methods for answering calls for action. J Community Genet 9:335–340

    Article  Google Scholar 

  26. Darmstadt GL, Howson CP, Walraven G et al (2016) Prevention of congenital disorders and care of affected children: a consensus statement. JAMA Pediatr 170(8):790–793

    Article  Google Scholar 

  27. Bhide P, Gund P, Kar A (2016) Prevalence of congenital anomalies in an Indian maternal cohort: healthcare, prevention, and surveillance implications. PLoS ONE 11(11):e0166408. https://doi.org/10.1371/journal.pone.0166408

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  28. Christianson A, Modell B (2004) Medical genetics in developing countries. Annu Rev Genomics Hum Genet 5:219–265

    Article  CAS  Google Scholar 

  29. Liu L, Oza S, Hogan D et al (2016) Global, regional, and national causes of under-5 mortality in 2000–15: an updated systematic analysis with implications for the Sustainable Development Goals. Lancet 388(10063):3027–3035

    Article  Google Scholar 

  30. Ujagare D, Kar A (2020) Birth defect mortality in India 1990–2017: estimates from the Global Burden of Disease data. J Community Genet 12:81–90

    Google Scholar 

  31. Hug L, Alexander M, You D et al (2019) National, regional, and global levels and trends in neonatal mortality between 1990 and 2017, with scenario-based projections to 2030: a systematic analysis. Lancet Glob Health 7(6):e710–e720

    Article  Google Scholar 

  32. Czeizel AE, Intody Z, Modell B (1993) What proportion of congenital abnormalities can be prevented? BMJ 306(6876):499–503

    Article  CAS  Google Scholar 

  33. Czeizel AE (2005) Birth defects are preventable. Int J Med Sci 2(3):91

    Article  Google Scholar 

  34. Sixty-third World Health Assembly WHA63.17 agenda item 11.7 21 May 2010 birth defects. Available via https://apps.who.int/gb/ebwha/pdf_files/WHA63/A63_R17-en.pdf?ua=1. Accessed Mar 2018

  35. UNICEF country profile. India Available via https://data.unicef.org/country/ind/. Accessed Mar 2018

  36. Central Bureau of Health Intelligence, Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India. Source national health profile 2018. Available via file:///Users/anita/Downloads/NHP%202018.pdf. Accessed Mar 2018

    Google Scholar 

  37. International Institute for Population Sciences (IIPS) and ICF (2017) National family health survey (NFHS-4), 2015–16: India. IIPS, Mumbai. Available via https://rchiips.org/nfhs/pdf/NFHS4/India.pdf. Accessed Mar 2018

  38. Ministry of Health and Family Welfare. Health management information system. Available via https://nrhm-mis.nic.in/SitePages/Home.aspx. Accessed Feb 2020

  39. National Accreditation Board for hospitals and healthcare providers? Available via https://www.nabh.co/frmViewAccreditedHosp.aspx. Accessed Mar 2018

  40. Sagar R, Dandona R, Gururaj G et al (2020) The burden of mental disorders across the states of India: the Global Burden of Disease Study 1990–2017. Lancet Psychiatry 7(2):148–161

    Article  Google Scholar 

  41. Dandona L, Dandona R, Kumar GA et al (2017) Nations within a nation: variations in epidemiological transition across the states of India, 1990–2016 in the Global Burden of Disease Study. Lancet 390(10111):2437–2460

    Article  Google Scholar 

  42. National Health Authority. Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (PM-JAY)? Available via https://pmjay.gov.in/about/pmjay. Accessed Mar 2018

  43. Mackintosh M, Channon A, Karan A, Selvaraj S, Cavagnero E, Zhao H (2016) What is the private sector? Understanding private provision in the health systems of low-income and middle-income countries. Lancet 388(10044):596–605

    Article  Google Scholar 

  44. Liu L, Chu Y, Oza S et al (2019) National, regional, and state-level all-cause and cause-specific under-5 mortality in India in 2000–15: a systematic analysis with implications for the Sustainable Development Goals. Lancet Glob Health 7(6):e721–e734

    Article  Google Scholar 

  45. Government of India, Ministry of Health and Family Welfare, National Health Mission (2013) Rashtriya Bal Swasthya Karyakram. A child health screening and early intervention services under NRHM. Ministry of Health and Family Welfare. Available at https://nhm.gov.in/images/pdf/programmes/RBSK/Operational_Guidelines/Operational%20Guidelines_RBSK.pdf. Accessed 6 Aug 2019

  46. Ministry of Health and Family Welfare, Government of India. Guidelines on haemoglobinopathies in India, 2016. Available via https://nhm.gov.in/images/pdf/programmes/RBSK/Resource_Documents/Guidelines_on_Hemoglobinopathies_in%20India.pdf. Accessed Mar 2020

  47. Ministry of Health and Family Welfare, Government of India. National policy for treatment of rare diseases? Available via https://main.mohfw.gov.in/sites/default/files/Rare%20Diseases%20Policy%20FINAL.pdf. Accessed Mar 2020

Download references

Author information

Authors and Affiliations

  1. Birth Defects and Childhood Disability Research Centre, Pune, 411020, India

    Anita Kar

Authors
  1. Anita Kar
    View author publications

    You can also search for this author in PubMed Google Scholar

Editor information

Editors and Affiliations

  1. Birth Defects and Childhood Disability Research Centre, Pune, India

    Anita Kar

Rights and permissions

Reprints and permissions

Copyright information

© 2021 Springer Nature Singapore Pte Ltd.

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Kar, A. (2021). Birth Defects: A Public Health Approach. In: Kar, A. (eds) Birth Defects in India. Springer, Singapore. https://doi.org/10.1007/978-981-16-1554-2_1

Download citation

  • DOI: https://doi.org/10.1007/978-981-16-1554-2_1

  • Published:

  • Publisher Name: Springer, Singapore

  • Print ISBN: 978-981-16-1553-5

  • Online ISBN: 978-981-16-1554-2

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation