The little girl’s story - Stories of hope and learning from our thalassemia program

When I walked up the stairs of Samraksha today I realised that a little girl was peeping down from the stairs. The look in her eyes told me that she was waiting for me. I shared the usual pleasantries with the family and walked across a hall full of children and parents straight to the doctor's room. We had a meeting scheduled for the day and soon I found myself with 2 of my friends in a room discussing the future roadmaps.

The door of the room was left open. Occasionally one of the parents would walk past the door just to take a quick look inside to see if I was free. Families have numerous things, big and small, to discuss on a Sunday. The whole point of my organisation deputing me to be there on Sundays is to talk to the families. The meeting was a very important one and the discussion continued uninterrupted.

Just then a little girl walked straight into the room making her way across the chairs. She is one of the little ones who put blood disorders to shame. Great at academics and always full of life. Without a word, she came and handed me a chocolate. I asked her if it was her birthday today. She replied “9th April”. I gave her a warm hug and wished her. She was happily running out of the room with the face which read mission accomplished. The meeting resumed.

An hour later, when we finished the meeting, her mother was still standing around the corner outside. She raised the paper in her hand and showed it to me. She spoke “9.5”. I smiled. She was telling me that her daughter's haemoglobin has been well maintained in the last 3 months. It was a short overwhelming moment. I wished them well, asked them to continue the great compliance and bid them goodbye.

Three months back, while analysing her medical history on ThalCare, something we do on a routine basis, there was a realisation. It appeared that she was a patient of sickle beta thalassemia a child whose one parent was sickle cell disease carrier and the other was a beta thalassemia carrier. Working with children suffering from thalassemia over last few years, we have had a lot of things to learn. One of those learning pointed that this child may not be receiving the best treatment option for her. Over next 1 week, we called the whole family and carried out comprehensive counselling and screening. We decided to switch her management from blood transfusions to the use of hydroxyurea something that is the standard of care internationally for children suffering from sickle cell disease. She was one of the 4 families whose treatment regimen was switched at that time.

As I write the article, 3 of the 4 have gained complete transfusion independence. The other 1 is still struggling to comply with the therapy. All 4 are now getting the best treatment option available for their situation! From chronic transfusions, consequent iron overload and numerous consequent complications, now, these children are getting customised treatment best suited for their individual condition.

“Thousands of children suffering from hemoglobinopathies continue to receive inappropriate care and management in our country. Of-course financials have a role to play. However, the knowledge, competence and attitude of the care-giving staff is also a serious limitation. We are committed to doing what we can to enable proper thalassemia management and care for each child.

Patrika Edition
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