‘Thalassaemia test important for to-be mothers’

A simple pre-natal test was all that was needed to ensure that baby Arya was born healthy and free of the deadly blood disorder, thalassaemia major. But neither Kandivli resident Divya Mansukhani (name changed), the 32-year-old mother, nor her gynaecologist were aware of the need for such a test.

“It was only when Arya, 5, was diagnosed as thalassaemia major at two-and-a-half months that I found out that the Sindhi community, among others, is particularly vulnerable to the disorder, and that a blood test could have saved her from it,” recalled Mansukhani.

“Unfortunately, not many people are aware that it can be prevented. What’s more appalling is that several gynaecologists too are ignorant of this fact,” said Parth Dalal, member of We Care Trust, an NGO for Thalassaemia major patients in Mumbai.
Like Mansukhani, Dalal too learnt this the hard way —he lost his two-year-old son Teerth to the disorder—and has been working to create awareness about the disorder ever since.

The trust has now approached over 500 gynaecologists and has written to the government urging them to make thalassaemia test mandatory for couples before marriage. “Gynaecologists should insist on this test (which does not cost more than Rs1,200) along with the blood tests to detect sugar level and HIV tests that are prescribed to expecting mothers,” said Sapna Jeswani of We Care Trust.

When Mansukhani asked her gynaecologist for an explanation, she was told that not every Sindhi suffers from thalassaemia, and therefore the test was not necessary. “Had I known about the test, I would have definitely opted for it. My daughter does not lead a normal life, she needs blood transfusions every two weeks, which come with the risk of blood infections; she cannot play normally, her diet is restricted, I have to refuse her a lot of things,” said Mansukhani, almost in tears.