NEW DELHI: One in 44 children in India are affected by birth anomalies, and which contribute significantly to infant mortality, lifelong disabilities, and financial and emotional strain on families, said experts here at the Birth Anomalies Network of India event on Monday.
Despite birth anomalies or congenital anomalies accounting for a growing proportion of child mortality,with as many as 16% of global deaths occurring in India, it often doesn't receive sufficient attention. The need of the hour is to establish a national birth anomalies task force to develop a holistic strategy for surveillance, early identification, registry systems and mortality reporting, experts added.
To improve awareness, Smile Train India and the Birth Defects Research Foundation announced the launch of BIND – Birth Anomalies Network of India, a first-of-its-kind national forum aimed at closing critical gaps in prevention, early detection, treatment, and long-term care for children born with birth anomalies.
The network seeks to align stakeholders across government, healthcare, research institutions, and civil society to strengthen surveillance and data systems, promote preventive measures, expand awareness of anomaly scans and newborn screening, improve timely access to quality treatment, and drive evidence-informed policymaking in a coordinated way.
At the core of the initiative is the proposed National Birth Anomalies Registry, which aims to generate authentic data, identify preventable risk factors, and guide equitable resource allocation.
Speaking at the launch, Mamta Carroll, Vice President and Regional Director of Smile Train, Asia, said, “Birth anomalies have remained under-recognized in public discourse for far too long.”
“BIND aims to create a unified platform that brings together clinicians, researchers, caregivers, policymakers and civil society around a shared national purpose. BIND is launched with an ambitious vision to a more enabling and inclusive environment where every child born with a birth anomaly has timely access to timely information, quality treatment, rehabilitation, and long-term support, and every family is empowered with the care and dignity they deserve,” she said.
Smile Train India has supported more than 7,50,000 free cleft surgeries across India, through a network of over 130 partner hospitals since 2000.
Dr Anita Kar, Director, Birth Defects Research Foundation, Pune, an NGO, which is dedicated to evidence-based advocacy for birth defects and childhood disabilities in low resource settings, highlighted the research gap in India.
“India lacks robust nationwide data on the true burden, causes, and long-term outcomes of birth anomalies. Without strong surveillance and registry systems, policies remain fragmented and reactive.”
“Children with congenital conditions require integrated, multidisciplinary care, from early diagnosis to safe and sustained comprehensive care supported by sustained public investment and evidence-based planning.”
Birth anomalies are medical conditions that are caused by anomalous development of body structures of the foetus during pregnancy.
Birth anomalies result in childhood disability and lifelong medical conditions, but many common birth anomalies can be treated, averting disability and reducing complications.