Narayana Health emerges as ray of hope for children with rare life threatening disease
4 min read
- Three children from Mysuru were saved from fatal conditions using Bone Marrow transplant at the dedicated Bone Marrow Transplant Department at Narayana Health City, Bengaluru
- The children were suffering from life-threatening diseases namely CDA (Congenital Dyserythropoietic Anaemia), Thalassemia and Paroxysmal Nocturnal Haemoglobinuria (PNH) respectively
Mysore: Parents of 2-month-old baby L, 5-month-old baby S and 10-year old boy L are relieved these days as their children have been cured from the rare conditions that they were suffering from.
Hailing from Mysuru, baby L, baby S and boy L were suffering from Congenital Dyserythropoietic Anaemia (CDA), Thalassemia Major and Paroxysmal Nocturnal Haemoglobinuria (PNH) respectively.
The children were cured from these fatal conditions through BMT (Bone Marrow Transplant) at the Paediatric Haematology, Oncology and Bone Marrow Transplant Department at Narayana Health City, Bangalore, a division of Narayana Health. Though Baby L and Baby S couldn’t get a full match donor, their condition was successfully treated using stem cells from half-matched donors. L was fortunate and he was treated using fully matched donor stem cells. Today all three children are leading a near-normal life. The Paediatric Haematology, Oncology and Bone Marrow Transplant Department at Narayana Health City has treated more than 1500 patients from across the country since its inception.
Hailing from Mysuru Baby L was only 2 months old when the baby was diagnosed with Congenital Dyserythropoietic Anaemia (CDA), a rare inherited blood disorder that affects the development of red blood cells. This disorder is characterized by a shortage of red blood cells which in turn prevents the blood from carrying an adequate supply of oxygen to the different body tissues. The child was initially on continuous blood transfusions. But as he started developing growth failure and jaundice, the parents in consultation with the doctors opted for a bone marrow transplant, the only effective curative treatment for Congenital Dyserythropoietic Anaemia (CDA). However, unfortunately for the baby, the baby had no fully matching donors in the family or elsewhere. The team of doctors did not lose hope, they decided to explore the possibility of treating using half matching donors. The baby was treated through a very complex transplant using half-matched cells of the father. The baby is now more than 6 months post-transplant and is cured of the condition.
While Baby L was suffering from Congenital Dyserythropoietic Anaemia (CDA), the condition that Baby S was diagnosed with was Thalassemia Major. Baby S was 5 to 6 months old when the shocking diagnosis of Thalassemia Major was made. In this condition bone marrow fails to produce red cells and require lifelong blood transfusions. Usually, these patients do not live more than 2nd or 3rd decade of life. The only effective treatment for this condition is a bone marrow transplant. Again this baby, unfortunately, had no fully matched donor in the family, hence was advised a complex half match transplant using father’s stem cells who was half match. The transplant was done using a technique called TCR alpha/beta depletion. The baby had underwent a transplant at the age of 20 months and is more than 6 months post-BMT. today baby is as playful and happy as any other child.
Unlike Baby L and Baby S, Master L was 10 years old when he was diagnosed with a very rare condition called Paroxysmal Nocturnal Haemoglobinuria (PNH). This is a condition that is quite serious and life-threatening, the condition causes blood clotting in the body and also lead to bone marrow failure in this particular child. Fortunately, there was a full matched donor, his sister, who donated for him. Master is now 3 years post BMT, he is healthy and leading a normal life.
Elaborating about the treatment, Dr Sunil Bhat, Director and Head of Paediatric Haematology, Oncology and Bone Marrow Transplant at Narayana Health City, said, “All these children had very rare but very dangerous ailments requiring a bone marrow transplant. To make things complex, two of the children were very young and also did not have any fully matched donors. Half matched transplants which are very complex were employed on two of them using a very sophisticated technique of TCR alpha/beta depletion. The chances for complications both during and post-transplant are very high, however, owing to the team’s expertise the transplant was successful and the children’s body responded very positively to the transplant.”
Sharing his joy, father of Baby of L said, “We had lost all the hope and were scared that we will lose our child . Thankfully, we happened to hear about the bone marrow transplant unit at Narayana Health City. We are grateful to Dr Sunil Bhat and the entire team for not only curing my son but also the children of my friends from this dreadful disease.”
Sharing her feelings, Mother of S, said “The diagnosis of our daughter was shocking and we had guilt that the disease has come from the parents. To make things worse, she had no full matched donor for transplant. Dr Sunil Bhat gave us hope that with half match donor also she can be cured. We are thankful to his team at Narayana Health City, Bangalore. They treated us with love and compassion”.
Bone marrow is a soft, spongy tissue found in your bones. It is responsible for producing stem blood cells which further give rise to blood cells including red blood cells, white blood cells, and platelets which are responsible for the normal functioning of the body ranging from circulation of oxygen to cells to clotting of blood. And Bone marrow transplant is a procedure performed to replace damaged or diseased bone marrow with healthy blood-forming stem cells. Some of the conditions wherein Bone Marrow Transplant is the accepted form of curative treatment are aplastic anaemia, blood cancers including leukaemia or lymphoma and other immune deficiencies and genetic disorders like sickle cell disease.
K V Kamath, Dr Pavan and parents Sheela, Manjunath and others were present.
– Team Mysoorunews
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