Matching horoscopes is very well. What if the stars align but the haemoglobin genes are out of whack? That’s a guaranteed recipe for a difficult family life
Knowing that thalassaemia is present, to whatever extent, in one or both partners, prepares them to expect trouble. Representation Pic
So your parents have done their bit. They’ve matched your horoscope with suitors and found the perfect match for you. Here’s something you should do next—take a certain blood test. The story of Madhubala (not her real name) explains why.
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Her parents, in a Maharashtra village, married Madhubala off when she was young. That might have been 13 or 14. Perhaps she was a sweet 16; it was inconsequential. What mattered was that she had begun menstruating and could therefore bear children. A boy was found, let’s call him Raja, and there was a ceremony. They were officially man and child.
In short order after the marriage, she became pregnant and duly delivered a male child, becoming another teenage mother. They named the boy Ankur.
It soon became apparent that something was not right with Ankur. He was weak, slept a lot and got easily tired from small exertions. A blood test revealed that he had thalassaemia major, a hereditary blood disorder that diminishes the body’s ability to produce haemoglobin, a vital protein found inside red blood cells. Without haemoglobin, red blood cells cannot carry oxygen to different parts of the body. Ankur would need transfusions of red blood cells throughout his life, one every three weeks.
It is possible that the doctor there told them the implications of thalassaemia, as well as its causes. It’s possible they didn’t pay enough attention, or listened but did not quite understand everything he said. Madhubala and her husband went home without any idea that they were the direct cause of their child’s sickness.
They thought Mumbai would be the best place for the transfusion. They found a suitable hospital, and in a room where a modest multitude of patients were receiving transfusions, a sample of Ankur’s blood was first cross-matched before his transfusion began.
It would be carefully paced over several hours so that the sudden influx of haemoglobin did not throw his body into shock. It was almost evening by the time they could leave. This became their schedule every few weeks.
Seven years later, Madhubala became pregnant again. In her mid-twenties now, she delivered another child, also male, also with thalassaemia major and requiring blood every three weeks. They named him Prabhat. Not long after, Madhubala’s husband, tired of living a life built around procuring lifeblood for his two sons, left the marriage.
Madhubala moved to Mumbai and now lives in a suburb, taking life three weeks at a time to keep her boys, now 21 and 14, alive. She continues to take them to a transfusion centre, one of several across the city. One dedicated to thalassaemic children is at Borivli, unwieldly called the Comprehensive Thalassemia Paediatric Hematology Oncology and Bone Marrow Transplant Centre.
Getting her sons blood on time is only one of Madhubala’s labors. Thalassaemia patients also invariably deal with an overload of iron caused when red blood cells die normally, and the iron—the haemo in haemoglobin—floats around in the blood, depositing itself in organs. This alone can cause complications leading to early death. Evacuating the excess through daily chelation tablets is part of a thalassaemic’s routine.
A child runs the risk of being born thalassaemia major only if both its parents have thalassaemia minor. No one simplifies the intricacies of thalassaemia as well as Vinay Shetty, a lifelong advocate of blood donation who has saved innumerable lives by finding the blood they needed just in time.
“Red blood cells contain haemoglobin, which requires two genes,” he says. “If both your haemoglobin genes are okay, you don’t have thalassaemia. If one of them is abnormal, you have thalassaemia minor. You will feel normal, live normally, and not require regular transfusions. If both your haemoglobin genes are mutated, then you will have thalassaemia major. Your body cannot make its own haemoglobin-laden red blood cells and you will need transfusions as long as you live.”
Both Madhubala and her husband Raja had thalassaemia minor but did not know it. Since both had been living more or less normal lives, it never occurred to them to go for a blood test before having a child.
This brings us again to the well-matched couple. What if the charts match perfectly but the haemoglobin genes are abnormal? Knowing that a thalassaemia minor is present forewarns a couple that their future child could be at risk.
Vinay Shetty comes to the rescue again. “If one of the parents is a thalassaemia minor and the other is not, the child has a chance of being thalassaemia minor. If both are thalassaemia minor, that’s the worst outcome possible—their child has a risk of being thalassaemia major.”
“The tragedy of it,” he says, “is that India has countless families whose lives now revolve around getting regular donated blood for their children.”
The solution is absurdly easy: once in your life, preferably sometime before you marry, get yourself tested for thalassaemia. If you test positive, discuss it with the one you plan to marry.
If they turn out to be positive as well, then you may need some conversations before putting a bun in the oven.
You can reach C Y Gopinath at cygopi@gmail.com
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The views expressed in this column are the individual’s and don’t represent those of the paper.
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