For most of the time in all these years, it was the government hospitals that we were forced to seek resort in. We stood in queues overnights for her transfusion. To add on, the medicines needed to control iron accumulation in the blood are out of stock most of the times. We had to spend a lot trying to get those from private shops. The times when we had no money we had to stop the medicines. We have such a broken fate that to make things worse, even the medicines didn’t work. I don’t know why is our fate so against us.
My name is Subhra and I am a housewife staying in Bardhaman, West Bengal. My husband, Tarun is a private tutor and barely manages to earn Rs 4000 a month. Poverty hadn’t stuck us this bad unless my little girl became sick.
We thought our little bundle of joy was normal like any other child when we brought her home. After 2 days, she suddenly became unconscious. I still shiver thinking how scared Tarun and I were.
When we took her to the doctors, they told us she had jaundice. She underwent 72 hours of constant phototherapy. We could finally take her home thinking that she is fine. Within a day I noticed that whenever I tried feeding her, she would choke and turn blue.
We rushed from one doctor to another. Nobody could tell us what was going on with her. We just had to helplessly see her starve as she couldn’t eat at all. Finally, doctors suggested us to carry detailed tests. My little girl was diagnosed with thalassemia, a severe blood disorder where red blood cells can’t be produced.
My baby girl is now 8 years of age. She has been on blood transfusions since she was 1 and half month old. Doctors had told us long back that she can survive on blood transfusions momentarily, but bone marrow transplant is what will give her a normal life.
We thought we had time for this but her condition has deteriorated. The problem with blood transfusion is that there is iron accumulation in the blood. For a child of her age, ideal iron concentration should be between 50-150 mcg/dL. But alarmingly for my little girl, it is 5000 mcg/dL. Due to her increasing iron concentration, her several organs might fail too.
My Aishika is a very active child. Looking at her, nobody will ever be able to say she is fighting such a tough battle in life. She likes to paint and dance. But now her body doesn’t even permit her to do things she once loved. She can’t even go to school. At an age, where she deserves to explore the world, she has been forced to live a life of medicines and needles. I can’t even imagine her pain.
I have lost all hope from life. It’s so difficult to maintain such an expensive treatment. We have no relatives to help us. So far whatever we have been able to do, is with the minimum income of my husband. I have no count on how much we have spent for all these years. The medical treatment comes with such huge expense which is impossible for us to bear.