India records nearly six lakh births affected by congenital anomalies every year, according to health experts, yet there is no comprehensive national registry to systematically document and monitor these cases. As infectious causes of child mortality decline due to improved immunisation and public health interventions, congenital conditions are accounting for an increasing proportion of infant and child deaths. Experts emphasise that the absence of a centralised data system limits effective policy planning and targeted healthcare interventions.
Recent estimates indicate that India contributes approximately 16 percent of global deaths linked to birth defects. Medical professionals highlight that reliable nationwide data is essential to understand the scale of the burden, identify preventable risk factors and strengthen early intervention strategies. Without coordinated surveillance, health authorities face challenges in allocating resources and designing preventive programmes.
In response to this gap, Smile Train India and the Birth Defects Research Foundation have launched the Birth Anomalies Network of India in New Delhi. The initiative aims to promote awareness, improve early diagnosis and advocate for structured long term care for children born with congenital conditions.
A key proposal under the initiative is the establishment of a National Birth Anomalies Registry. Such a registry would generate reliable and standardised data from across states and union territories. Experts believe this would help identify regional patterns, assess environmental and genetic risk factors and guide health planning at both national and state levels.
Currently, surveillance mechanisms for congenital anomalies are fragmented. Screening programmes vary widely across regions, with metropolitan hospitals often having better diagnostic capabilities compared to rural and semi urban areas. Referral systems are also inconsistent, leading to delays in treatment. Health specialists note that timely intervention is crucial, as many congenital conditions are treatable or manageable if detected early.
Common congenital anomalies contributing significantly to the burden include congenital heart disease, cleft lip and palate, spina bifida, clubfoot, Down syndrome and sensory impairments affecting vision and hearing. While specialised treatment centres exist in major cities, multidisciplinary care that integrates paediatricians, surgeons, rehabilitation specialists and counsellors is not uniformly available within routine newborn services.
Public health experts argue that prevention strategies must include improved maternal nutrition, access to antenatal screening, genetic counselling where appropriate and awareness campaigns about modifiable risk factors. Strengthening newborn screening programmes and training frontline healthcare workers are also considered essential steps.
The launch event in New Delhi brought together clinicians, researchers and public health professionals who stressed that coordinated national action is required to address the growing burden. They emphasised that establishing a registry would not only improve data accuracy but also enhance accountability and long term monitoring of outcomes.
As India continues to advance in reducing infectious disease related mortality, experts maintain that addressing congenital anomalies must become a parallel priority within child health policy. Structured data collection, early detection and integrated care systems are viewed as critical components in improving survival and quality of life for affected children.
