Birth defects awareness month: ‘Many babies born with birth defects miss timely care, need a collective voice’

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?

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.