Millions of children are born in India each year, and the successes in maternal and child health policies have led to improved infant survival rates, more institutional deliveries, and better attention to newborn care. According to the recently released NFHS-6 (2023–24), institutional deliveries in India rose to 90.6 per cent, up from 88.6 per cent in NFHS-5, with 91.3 per cent of births now attended by skilled health personnel and nearly 88 per cent of newborns receiving postnatal care within two days of birth. But one important issue in our healthcare sector still requires greater attention: birth anomalies.
Birth anomalies — congenital conditions such as cleft lip and palate, congenital heart defects, clubfoot, spina bifida, Down syndrome, hearing impairment, and congenital cataracts- are medical conditions caused by anomalous development of the baby’s body structures during pregnancy. Some conditions can be detected by prenatal ultrasound, but most birth anomalies are recognised at birth as a disability or a medical complication in the newborn. Most common birth anomalies can be successfully treated and managed if diagnosed early, allowing the children the opportunity to live healthy and full lives. Screening babies soon after birth for visible birth defects is very important, as the best treatment outcome is achieved when medical, surgical, or rehabilitative care is offered early. This is why the World Health Organization has recently come up with a guidance document on newborn screening for birth anomalies. India stands out as it already has in place guidelines for the comprehensive screening of newborns for visible birth defects.
Hand-in-hand with screening comes the need for compiling this information into routine health data systems. Unfortunately, there is no public data on the number of babies born with birth anomalies in India. This despite 4.4 and 6.6 lakh pregnancies may be affected by a birth anomaly in India each year. Strengthening identification and documentation of birth anomalies through a national registry would be an important step towards better planning, timely interventions, and improved health outcomes for children across India. Strengthening the availability of credible data will not only improve our understanding of birth anomalies but also enable more informed and effective healthcare policymaking.
There are currently limited hard statistics on where children are born with congenital disabilities, where the problem is most acute, how many children undergo treatment, and what their outcomes are. Without accurate data, proper resource allocation and monitoring of public health services become very difficult. India has already made significant investments in the form of the Rashtriya Bal Swasthya Karyakram (RBSK), one of the largest child screening and intervention programs globally. More than 1.6 billion children have been screened through the RBSK program, and District Early Intervention Centres have been established nationwide. The need for data becomes even more urgent as the need to track the progress of children from diagnosis to treatment, rehabilitation if necessary, their health and developmental status, and school enrollment.
A national birth anomalies registry is exactly what India needs today, where every baby with a birth anomaly is registered. Registering babies with birth anomalies will not only enable the country to shift from making estimates based on assumptions to making data-driven decisions. The registry will not only provide information on birth anomaly patterns, geographic variation, treatment, and trends but also aid policymakers in the effective allocation of funds. The registry will have an impact beyond just data collection, improving prevention, newborn screening, referral, and research. Most importantly, it will give children and adults with birth anomalies respect, as registration into public data systems confirms acknowledgement of their presence by the health service.
For organisations such as the world’s largest cleft-focused charity, Smile Train, data collection is an integral part of their operations aimed at creating sustainable change. Over the last 25 years, Smile Train has worked hand in hand with local medical professionals to improve cleft care in India. And as experience has shown over and over again, early diagnosis, prompt referral, multi-speciality treatment, and follow-up significantly increase the chances of a good outcome for children with cleft lip and/or palate. All these activities have been possible with the backing of its systematic documentation and analysis of the data of the large number of children who have benefited from Smile Train.
Similar data needs to be documented for all types of birth anomalies. A robust national register would be central to making this possible, helping close information gaps early and ensuring every child is registered and accounted for, so that families get the support and care they deserve.
Creating this registry will require teamwork and multistakeholder support. The government, the hospitals, the medical professionals, researchers, NGOs, and patients’ and parents’ groups all play key roles in this process.
India already has most of the skills and resources necessary to deal with birth abnormalities. What remains missing is the data platform that will allow all these pieces to fit together. The creation of a national registry of birth anomalies is not just a numbers game; it is the beginning of improved health systems, evidence-based policymaking, and increased health equity.
By incorporating effective monitoring and collaborating with platforms such as BIND (Birth Anomalies Network of India), India stands as a role model across the world where birth anomalies are recognised as a child health issue of concern and where children with birth anomalies will never go unnoticed or unaddressed.