India records nearly 26 million births annually, but without a unified tracking and response system, many babies born with major birth defectsgo unidentified and miss timely care. Now, for the first time, medical institutions, civil society and patient groups are coming together to demand coordinated screening, stronger policy focus, and collective action. March is observed as the birth defects awareness month in India and on Monday, March 2, the Birth Anomalies Network of India (BIND), a national collective, will be launched in New Delhi.
Dr Anita Kar, Founder and Director, Birth Defects Research Foundation and Mamta Carroll, Vice President and Regional Director-South Asia, Smile Train, explained that the network aims to bring visibility to birth anomalies as urgent public health issues, encourage newborn screening and early referral systems, promote the development of a national registry, empower caregivers and health providers with evidence‐based information, foster a community of birth‐defects researchers and promote the full inclusion of children and adults with congenital conditions in mainstream society.
Dr Anita Kar, Founder and Director, Birth Defects Research Foundation and Mamta Carroll, Vice President and Regional Director-South Asia, Smile Train.
In an interview with The Indian Express, Dr Kar, who is also a former Professor and Director of the School of Health Sciences of Savitribai Phule Pune University, where she was instrumental in setting up one of the first University Grants Commission supported Master of Public Health programmes in the country, said that there was very little connection between the groups working on different types of birth defects. “All activities are occurring in silos. This is the reason for BIND—the Birth Anomalies Network of India, which is intended to be a collective voice for birth defects,” Dr Kar said.
How common are birth defects?
India contributes to 16% of birth defects deaths taking place worldwide. NFHS-5 estimates that 3.3% of pregnancies are discontinued after detection of a foetal malformation. The number of babies dying due to birth defects is increasing in India, pointing to the need for public health services for birth defects for pregnant women and newborns. Nearly one-third of birth defect deaths is caused by congenital heart defects. Nine among 1,000 children under-five years of age live with a birth defect in communities and not all are treated. Birth defects are troublesome medical conditions. They cause disability and lifelong medical complications, for example children with congenital heart defects, clubfoot, cleft lip and palate, spina bifida, Down syndrome, or children who are blind or deaf since birth. The conditions are painful, and they are associated with a lot of emotional distress and stigma.
Treatment can make a difference between a life with disability and a disability -free life. But what is the biggest challenge?
Unfortunately there is a stigma associated with having a child with a disability and or lifelong illness. Treatment changes the life of the child and the family. Putting a baby with clubfoot in braces, surgery for heart defects or cleft lip and palate or eye surgery for congenital cataract can mean the difference between a life with disability, and a disability-free life. Some disability is not reversible, for example Down syndrome, but providing speech therapy, occupational therapy or physiotherapy can reduce hospital visits, and improve quality of life of children and their parents. The biggest challenge at this point of time is the critical shortage of care for children with birth defects, which is further compounded by low awareness that free of cost treatment is available at District Early Intervention Centres (DEIC) at district hospitals. The Birth Defects Research Foundation is actively involved in research in the field of birth defects, estimating how many are affected and how these conditions impact children and families. Our research highlights that India has an enormous public health problem on its hands.
If treatment for birth defects is complex, lifelong and costly, what systemic changes are needed to ensure no child is left behind?
Story continues below this ad
Treatment is also not a one-time affair. It requires multiple hospital visits, specialist care by paediatric surgeons, frequently followed up by rehabilitation therapies. Limited facilities at government hospitals result in families having to pay for the significant cost of treatment. NGOs are supporting treatment. Professional organizations are focussing on training young doctors in these specialist activities. Most importantly, the Rashtriya Bal Swasthya Karyakram (RBSK) that funds treatment for birth defects,has now been rolled out throughout the country, and 430 District Early Intervention Centres DEICs have been set up across the country.
Anuradha Mascarenhas is a Senior Editor at The Indian Express, based in Pune. With a career spanning three decades, she is one of the most respected voices in Indian journalism regarding healthcare, science and environment and research developments. She also takes a keen interest in covering women's issues .
Professional Background
Education: A gold medalist in Communication and Journalism from Savitribai Phule Pune University and a Master’s degree in Literature.
Author: She authored the biography At The Wheel Of Research, which chronicles the life and work of Dr. Soumya Swaminathan, the former Chief Scientist at the WHO.
Key Focus: She combines scientific accuracy with storytelling, translating complex medical research into compelling public and human-interest narratives.
Awards and Recognition
Anuradha has won several awards including the Press Council of India's national award for excellence in journalism under the gender based reporting category in 2019 and the Laadli Media award (gender sensitivity -2024). A recipient of the Lokmat journalism award (gender category-2022), she was also shortlisted for the RedInk awards for excellence in journalism-2021. Her debut book At The Wheel Of Research, an exclusive biography of Dr Soumya Swaminathan the inaugural chief scientist of World Health Organisation was also nominated in the Popular Choice Category of JK Paper AUTHER awards. She has also secured competitive fellowships including the Laadli Media Fellowship (2022), the Survivors Against TB – New Research in TB Media Fellowship (2023) and is part of the prestigious 2025 India Cohort of the WomenLift Health Leadership Journey.”
Recent Notable Articles (Late 2025)
1. Cancer & Specialized Medical Care
"Tata Memorial finds way to kill drug-resistant cancer cells" (Nov 26, 2025): Reporting on a breakthrough for triple-negative breast cancer, one of the most aggressive forms of the disease.
Discipline, diet and purpose; How a 97-year-old professor defies ageing'' (Nov 15, 2025) Report about Prof Gururaj Mutalik, the first Head of Department at Pune's B J Government Medical College who at 97 credits his longevity to healthy habits and a strong sense of purpose.
2. Environmental Health (The "Breathless Pune" Series)
Long-term exposure even to 'moderate' air leads to chronic heart, lung, kidney issues" (Nov 26, 2025): Part of an investigative series highlighting that even "safe" pollution levels are damaging to vital organs.
"For every 10 µg/m3 increase in PM2.5 level, there was 6-8% jump in medicine sales" (Nov 23, 2025): Using commercial data to prove the direct link between air quality and respiratory illnesses in Pune.
3. Lifestyle & Wellness News
"They didn't let cancer, diabetes and heart disease stop them from travelling" (Dec 22, 2025): A collaborative piece featuring survivors who share practical tips for traveling with chronic conditions.
At 17, his BP shot up to 200/120 mmHG; Lancet study flags why child and teen hypertension doubled between 2000 and 2020'' (Nov 12,2025)--A report that focusses on 17-year-old-boy's hypertensive crisis and reflects the rising global trend of high blood pressure among children and adolescents.
4. Scientific Recognition & Infrastructure
For promoting sci-comm, gender diversity: IUCAA woman prof highlighted in Nature" (Nov 25, 2025): Covering the global recognition of Indian women scientists in gender studies and physics.
Pune researchers find a spiral galaxy like the Milky Way from early universe'' (December 3, 2025)- A report on how Indian researchers discovered a massive galaxy that existed when the universe was just 1.5 billion years old , one of the earliest to have been observed so far.
Signature Beat: Health, Science & Women in Leadership
Anuradha is known for her COVID-19 reportage, where she was one of the first journalists to provide detailed insights into the Covishield and Covaxin trials. She has a dedicated interest in gender diversity in health and science, often profiling women researchers who are breaking the "leaky pipeline" in STEM fields. Her writing style is scrupulous, often featuring interviews with top-tier scientists and health experts from various institutions.
... Read More
Dr Anita Kar, Founder and Director, Birth Defects Research Foundation and Mamta Carroll, Vice President and Regional Director-South Asia, Smile Train.
