New Delhi: On the eve of World Thalassemia Day (May 8), the news of two thalassemia children of pauper parents getting precious gift of life for free is really heart warmimg. Indraprastha Apollo Hospital helped raise funds for the costly surgery.
7-year-oldSuswati was diagnosed with Thalassemia major at birth. The child was kept under optical care and went through multiple blood transfusions and supportive medications. Unfortunately, the second child of the same parents was also diagnosed with Thalassemia couple of weeks after his birth. Hailing from West Bengal, merely trying to make ends meet, parents of Suswati and Arijit (Age) were under a lot of mental and financial pressure, as both their children now had to undergo treatment. Both kids were on regular blood transfusions monthly to maintain it in a certain range so that the growth is not compromised. Apart from this they were on regular medicines to remove extra iron from body which gets accumulated after each blood (red cell) transfusion.
On consultation at Apollo, they were advised to get a bone marrow transplant for both the children and fortunately the team of doctors at Apollo was able to find multiple completely HLA identical (10/10) antigen matched unrelated donors in DATRI (unrelated donor registry) for both the kids. Another challenge that the family faced was monetary support. The team at Apollo, helped the parents gather funds through fundraising, ESI and other cooperative organizations.
Dr Gaurav Kharya, Clinical Lead, Centre for Bone Marrow Transplant and Cellular Therapy & Senior Consultant, Pediatric Hematology, Oncology and Immunology, said, “When Suswati and Arijit were brought to Apollo, both the children were undergoing supportive care and multiple blood transfusions that was putting a lot of monetary and emotional pressure on the family. After appropriate guidance and consultation, we advised the children to go through Bone Marrow Transplant. This was the final solution to protect the children from repeated trauma and treat them. We helped the family get monetary support by fundraising and support from various organizations. Post which, we immediatelywent ahead with Suswati’s BMT. The process was tough, but the child endured and fought through bravely. Five months post the transplant she is doing well. Subsequently her younger brother also went through successful BMT and post 17 days he is recovering well. In a typical Bone Marrow Transplant a sibling donor is required, but in this case unfortunately there were no healthy siblings as both kids were suffering from same disease thus, we had to opt for external donors which in this case were the voluntary unrelated donors from DATRI. In case this is also not available, 50% genetically identical family donors can also be considered for BMT at experienced centers.
Thalassemia is an inherited blood disorder that causes your body to have less hemoglobin than normal. It is caused by mutations in the DNA of cells that make hemoglobinthat carries oxygen throughout your
body. The mutations associated with thalassemia are passed from parents to children. Here, both the children had Thalassemia major which is a severe form and required regular blood transfusions. Diagnosis of Thalassemia can be made by simple test either Hb electrophoresis or preferably HPLC (High performance liquid chromatography). The test should be done before any blood transfusion otherwise they become difficult to interpret. Subsequently a confirmatory genetic test should be done wherever possible.