The test all lovers should take

So your parents have done their bit Theyrsquove matched your horoscope with suitors and found the perfect match for you Herersquos something you should do nextmdashtake a certain blood test The story of Madhubala not her real name explains whyHer 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 letrsquos call him Raja and there was a ceremony They were officially man and childIn short order after the marriage she became pregnant and duly delivered a male child becoming another teenage mother They named the boy AnkurIt 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 bodyrsquos 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 weeksIt is possible that the doctor there told them the implications of thalassaemia as well as its causes Itrsquos possible they didnrsquot 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 childrsquos sicknessThey 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 Ankurrsquos blood was first crossmatched before his transfusion beganIt 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 weeksSeven years later Madhubala became pregnant again In her midtwenties now she delivered another child also male also with thalassaemia major and requiring blood every three weeks They named him Prabhat Not long after Madhubalarsquos husband tired of living a life built around procuring lifeblood for his two sons left the marriageMadhubala 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 CentreGetting her sons blood on time is only one of Madhubalarsquos labors Thalassaemia patients also invariably deal with an overload of iron caused when red blood cells die normally and the ironmdashthe haemo in haemoglobinmdashfloats 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 thalassaemicrsquos routineA 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 timeldquoRed blood cells contain haemoglobin which requires two genesrdquo he says ldquoIf both your haemoglobin genes are okay you donrsquot 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 haemoglobinladen red blood cells and you will need transfusions as long as you liverdquoBoth 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 childThis brings us again to the wellmatched 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 riskVinay Shetty comes to the rescue again ldquoIf 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 thatrsquos the worst outcome possiblemdashtheir child has a risk of being thalassaemia majorrdquoldquoThe tragedy of itrdquo he says ldquois that India has countless families whose lives now revolve around getting regular donated blood for their childrenrdquoThe 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 marryIf they turn out to be positive as well then you may need some conversations before putting a bun in the ovenYou can reach C Y Gopinath at cygopigmailcomSend your feedback to mailbagmiddaycomThe views expressed in this column are the individualrsquos and donrsquot represent those of the paper