Times of India
10 May, 2010
By Pratibha Masand
Mumbai, India

Neha Makhija (32) cannot let her five–year–old daughter Survi join dance classes even though that is what the girl wants to do in her vacations. Neha neither takes Survi for skating or swimming, nor does the family go for long vacations like everyone else.

Dancing might exert the child, while skating and swimming may be harmful for Survi’s weak bones. And travelling outside Mumbai for Survi becomes difficult as she has to undergo a blood transfusion every 21 days. Survi suffers from thalassemia, a genetic disorder, that she had no role in acquiring.

Thalassemia is a group of inherited disorders in which there is a fault in the production of haemoglobin.

When Survi was born, neither Neha, nor her husband were aware what thalassemia is or how a newborn could get it. The couple later learnt that both Neha and her husband must have been thalassemia minor which resulted in their daughter being thalassemia major.

“We were not aware of the disease. But surprisingly, even the gynaecologist we were consulting, did not suggest that we get ourselves tested for the disease even though my haemoglobin counts were low,” says a repentant Neha.

“Every single day, I have to see my daughter suffering from so much pain,” she adds.

The only way that Survi can be completely fine is by a bone marrow transfusion. Survi’s parents left no stone unturned to get their little daughter respite from her agony.

“We were apprehensive about a second pregnancy earlier. But the doctors explained that the only way to save Survi would have been to give her a marrow transfusion from her own sibling,”said Neha. “When we learnt this, we were more than ready to have a second child. But I had to abort three babies as their blood would not completely match with Survi,” Neha added.

However, when Neha got pregnant a fifth time, her gynaecologist pointed out that so many abortions would not be good for her own self. Four months ago, Neha gave birth to a second daughter, even though her blood does not completely match with Survi.

“A thalassemia test should be made mandatory for every pregnancy. If the couple are both thalassemia minors, there are 25% chances that the child may be normal, 25% the child may be major, while 50% chances that the child may be thalassemia minor, in which case there is no danger to him,” said Sapna Jeswani, from ‘We Care’ trust, which works for thalassemia major children and their family.

The Disorder

Thalassemia is a group of inherited disorders in which there is a fault in the production of hemoglobin

Being thalassemia minor does not affect the person’s health at any point

But, it may lead their children to be thalassemia major, wherein the child will turn anaemic and weak. The blood would have to be transfused and the frequency will increase with the age

A thalassemia test has to be done only once in a lifetime. If a person does not carry thalassemia genetically, he/she can marry a thalassemia minor

Certain communities like Sindhi, Gujarati, Kutchi and Punjabi are known to have many carriers of thalassemia