Six lakh babies born with anomalies each year, but no national registry to track them

NEW DELHI: Every year, nearly 6 lakh babies in India are born with congenital anomalies. Yet, the country has no national registry to track them.

With congenital conditions now accounting for a growing share of child deaths as infectious mortality declines, experts say the gap in surveillance and coordinated care is becoming urgent. India contributes 16% of global deaths linked to birth defects, according to recent estimates.

On Monday, Smile Train India and the Birth Defects Research Foundation launched the Birth Anomalies Network of India (BIND) to push for prevention, early diagnosis, and structured long-term care. The multi-stakeholder platform was unveiled at the India Habitat Centre in New Delhi.

Central to its agenda is a proposed National Birth Anomalies Registry to generate reliable nationwide data, identify preventable risk factors, and guide health planning. Experts acknowledged that current surveillance is fragmented, screening is uneven, and referral pathways are weak, especially outside metros.

Congenital heart disease, cleft lip and palate, spina bifida, clubfoot, Down syndrome, and vision and hearing impairments form a substantial part of the burden. Many are treatable if detected early, but multidisciplinary care is rarely integrated into routine newborn services.

Mamta Carroll, vice president and regional director, Asia, Smile Train, said birth anomalies remained under-recognised in public discourse. Dr Anita Kar of Birth Defects Research Foundation warne that without systematic registries, policy responses remain piecemeal.


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