A neonatal revolution

Too often, newborns in India die of health disorders even before doctors can carry out a diagnosis. But with the newborn testing technology now in India, new mothers can breathe a sigh of relief. Done 24 hours after a baby is born, the Newborn Screening Test identifies serious metabolic disorders, Inborn Errors of Metabolism or IEMs, the baby might have been born with.

Satyen Sanghavi, Chief Scientific Officer, Babycell, a cord blood and tissue banking company, says, “These disorders, if undetected and untreated, can have adverse consequences for the baby’s health. These disorders are inherited and cannot be prevented. But they are treatable.” According to a new estimate published in 2011, nearly five million infants are victims of infant mortality due to neonatal disorders, of which 96 per cent are in the developing countries. Neonatal deaths is a serious concern in India. Every day, 30,000 children are born and one in every 1000 newborns has neonatal disorders; it  means 30 newborns per day are born with neonatal disorders. Annually, about two million children, under five years of age, die due to preventable diseases.

“Even healthy-looking babies and those with no family history of such disorders may suffer from such disorders. If a baby is born with a disorder, early detection and treatment is the only solution. Failure to start the treatment in time may result in mental retardation, physical disability or even death,” says Sanghavi.

The test is widely recommended by doctors and has a simple procedure. Dr Manjit Kochhar, consultant for obstetrics and gynaecology, Fortis La Femme, Delhi says: “The test is done by performing a painless heel prick on the baby and collecting a few drops of blood, 24 to 72 hours after birth. A complete panel would cost about Rs 5,000 to Rs 6,000 which is quite reasonable as compared to the benefits it provides and percentage of money spent in raising an affected child. A normal report gives peace of mind to parents. I think it is the best first gift parents can give to their child.”

The test is highly accurate and is used to screen about 51 disorders which are metabolic in nature, and in the first few days of life. “Basically, it looks for inborn errors of metabolism,” says Kochhar. While screening is mandatory in the US — where more than 47 states screen newborns for over 40 metabolic disorders, several Indian parents are yet to be sensitised.

“In general, few laboratories and hospitals in India are only offering newborn screening as an option to the parents. In India, the healthcare priorities are still limited to reducing the Infant Mortality Rate and meeting basic infrastructure requirements,” says Sanghavi. He adds that the Government of India is yet to have a mandatory screening programme for newborn babies. “However, measures have been undertaken by the state government in Goa which has made it mandatory to screen for 50 disorders of newborns in the state government health care facilities. This programme has been going on since 2008,” he says.

Experts believe awareness campaigns are the only way forward to sensitise new parents about this test. Kochhar says, “Direct patient counselling, success stories, seminars for doctors and parents are the way forward.”