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What can a couple do to help their child who has thalassemia?

Thalassemia is a form of anemia and results in chronic tiredness, bone problems, spleen problems, heart disease and more. A genetic disorder in which an estimated 8,000u201310,000 babies are born every year within India.

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What can a couple do to help their child who has thalassemia?

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  1. What can a couple do to help their child who has thalassemia? In the case of Alpa and Sahdev Singh Solanki, they turned to Nova IVI Fertility. And we helped them have a third child — India’s first savior sibling born through IVF. Bone marrow from the third child, will in some time help the sibling recover fully from the disease. This was possible only because of the advanced science and high levels of expertise which Nova IVI Fertility brought to bear on the case. What is thalassemia and how is it caused? Thalassemia is a form of anemia and results in chronic tiredness, bone problems, spleen problems, heart disease and more. A genetic disorder in which an estimated 8,000–10,000 babies are born every year within India. Because, it is an inherited disease, when both parents are carriers of the gene, but not suffering from the disorder (people like this are known as having thalassemia minor), it can be passed on to the children. Affected children are referred to as being thalassemia major.

  2. Treating Thalassemia For less severe cases, nutritional supplementation and regular blood transfusions are some of the ways of treating and managing the condition. There are other therapies too, but,

  3. especially in younger children, bone marrow transplantation from a matching donor helps overcome the disease in 80–90% of the cases. The problem with this is finding a matching donor, one who’s HLA (Human Leucocyte Antigen) is identical to the patients. Internationally, thanks to 22.5 million donors, the possibility of finding a match for an Indian patient is 16%. But in India, because there are just over 30,000 donors the chance is a measly 0.008%! So, what do parents of a child suffering from thalassemia do? If they are like the Solankis, they turn to the idea of having a savior sibling. What is a savior sibling? A savior baby or savior sibling is a child who is born to provide an organ or cell transplant to a sibling that is affected with a fatal disease, such as cancer or Fanconi anemia, that can best be treated by hematopoietic stem cell transplantation. At birth, the undifferentiated stem cells from the mother’s umbilical cord are extracted and tested for a match. If they do, the affected child is given the transfer. This process does not harm the mother or the newborn in any way. The story of the Solankis: The Solankis already had two children — a seven-year-old and a five-year-old, the older thalassemia free and the younger ones, the sufferer. Unfortunately, their older child’s HLA did

  4. not match. But for the Solankis, it was not as simple as having another child. With both parents being carriers of the gene, which causes the disease, there was a likelihood of the next child also having thalassemia. The only way they could ensure both a thalassemia-free child with a perfect HLA match was by having a child whose genes could be checked before conception, i.e. by advanced diagnosis and very high-quality IVF. This is why the Solankis turned to Nova IVI Fertility. And we did not let them down. What Nova IVI Fertility did? After extensive discussions, the clinical team, led by our Medical Director Dr. Manish Banker, came up with a detailed plan. The couple underwent 3 cycles of IVF to generate 18 embryos. With 18 embryos, the likelihood of having a normal embryo was much better. The embryos were examined on day 5 of their development (blastocyst culture), using PGD, Preimplantation Genetic Diagnosis — which allows for checking both the probability of an HLA match and the presence of thalassemia major. PGD resulted in finding 2 normal, 8 carrier and 8 abnormal embryos.

  5. When HLA matching was done, this was the result: 5 matched — 1 normal, 1 carrier and 3 abnormal. Only the matched normal embryo was used and the child born was found to be 10/10 HLA matched with the sibling and a bone marrow transplant is planned in the near future for the affected child.

  6. Why is it special? While the theory is well known, the actual procedure requires enormous expertise from the doctors, very high levels of

  7. skillset in the team of embryologists and access to world-class technology. Added to this is the following of extremely rigid protocols (the way the procedure is done). As India’s №1* fertility chain, only Nova IVI Fertility has the combination required to carry out complex IVF treatments like this. At Nova IVI Fertility, we are glad that the Solankis trusted us with the future of their children and we thank them for the opportunity to carry out this ground-breaking treatment. *Based on the Golden Globe Tigers 2018 award ceremony for Excellence and Leadership in Healthcare Management held on 23rd April 2018.

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