Even though barely any children with Down Syndrome now die in the developed world, the genetic disease is associated with high mortality in India, largely because of outdated advice many doctors give to parents.





Down Syndrome (DS) is a genetic disorder that leads to mental retardation and abnormal physical growth if the child survives that long.



The disease often comes with congenital heart diseases, which are treatable with surgery. But a large number Indian paediatrician still ask parents of DS babies not to go for the surgery if the child's body weight is less than 10 kg.



The advice is counter-productive as it may lead to the child's death many times, suggests a new study, published recently in the Indian Journal of Paediatrics.



“Many doctors in India still believe that infants with congenital heart disease have a poor chance of survival even if operated and surgery is feasible only after the child attains a weight of 10 kg. This could be detrimental, especially in DS children,” says Risha Nahar, lead author of the study.



Early surgery is advised because DS babies are prone to early development of pulmonary hypertension (a complication in babies with congenital heart diseases, if they are not operated in time), which compromises the benefit of corrective surgery.

Carried out by doctors from the centre of medical genetics at Sir Ganga Ram Hospital and All India Institute of Medical Sciences, the study advocated surgical intervention for better survival after analysing 543 children affected by the disease.



Every year between 23,000 and 29,000 children are born in India with Down Syndrome, which is the highest in the world. But the survival rate is only 44 per cent for those who have a congenital heart disease.



“If the heart condition is such that immediate surgery is required, the child should be operated immediately,” I C Verma, a former professor of AIIMS who now heads the centre at Ganga Ram hospital, told Deccan Herald.



For children who did not have immediate threat to life because of heart condition, doctors could wait for the baby to put on some weight, he said. Doctors prefer weight gain so that babies can withstand the pain and exhaustion caused by surgery.



“Waiting for the child to attain 10 kg body weight is a misconception now because of the technological advancement, which made it possible to operate even on new-borns. I agree with the suggestion of early surgical intervention,” commented veteran paediatrician H P S Sachdeva from Sitaram Bhartia Institute of Science and Research, who is not linked to the study. In the western countries, even in DS infants with heart diseases, the first year survival rate is above 70 per cent. This is in stark contrast to Indian scenario where first year survival rates for infants heart problems is mere 44 per cent.



Improved life expectancy in rich nations has been mainly attributed to early surgical intervention and better medical care, says the study.



