Lack of newborn screening: the mortality this causes in India is huge
About 26 million babies are born in India every year. But just 2% of the actually undergo the neonatal screening. Such screenings are quite the norm in western nations but not so in India. Using the screening, it’s possible to assess the possibility of genetic disorders. If there are disorders in newborns, it could lead to permanent neurological, cognitive, tactile and physical damage in a child. But if the disorders are detected early enough, they can be treated easily.
One major reason why the level of new born screening is so low in India is because of the low awareness level amongst doctors and parents-in-the-making.
Some of the factors which contribute to the high prevalence of genetic issues are consanguineous marriage and high birth rate. It’s estimated that some 5 to 15 % of newborn sick children in India have metabolic disorders.
Using newborn screening programs, it’s possible to spot the babies who have serious medical conditions, thereby enabling early treatment. Such children may look healthy at birth and won’t show symptoms until weeks or months later. This makes a newborn screening all the more significant.
If treatment is started early, issues including physical ailment, intellectual disabilities and in some cases, even death could be avoided. This being the case, there but exists no national policy for neonatal screening in India.
The health burden the nation incurs due to lack of a neonatal screening programme is also significant. It’s estimated that around 1 to 4 % of Indians are mentally retarded while 5 to 15% of newborn sick babies have metabolic disorders. Currently, the annual birth levels in India is at 27 million and the incidence level is 28 out of 1000. This means that the number of affected children who could gain from early diagnosis and treatment would be several thousands at least.
It’s also estimated that about one-third of paediatric mental retardation has for a cause the inability to detect metabolic disorders in early childhood. Over 98% of children born in the country are exposed to the risk of Congenital Hypothyridism. As of now, congenital malformations and hereditary genetic diseases are the third most common cause of mortality in newborns in India.
Governmental actions are necessary
The need for governmental action is significant on this regard because many countries have made it mandatory to have newborn screenings while we haven’t. Also, the lesser number of government funded neonatal screening centers means that for many parents, it’s an extra-financial burden.
One possible way to bring about a change is by identifying regional centers which can offer the relevant services and train the personnel. These centers-which should ideally be state funded could be the reference center for diagnosis and therapy. Perhaps, to scale up the model, a public-private partnership is required.
As of now, the screening program in the nation is funded neither by the central nor the state governments. It’s mostly private players who are in the fray. How viable these services would be for the multitude who still struggle to make ends meet in the country remains to be seen.
This entry has for its basis an article by Usha Nandini titled “Newborn screening: Is it an ignored necessity in India?”
Image credits: enewsinsight.com