Kids Suffering From Thalassemia Major Get New Lease Of Life

Narayana Health City treated four Sri Lankan children suffering from thalassemia major, a life-threatening disorder, through unrelated donor bone marrow transplant.

The doctors sourced matching bone marrow cells from unrelated donors from across the world and carried out the transplants at Bone Marrow Transplant Unit at the Mazumdar Shaw Cancer Centre, Narayana Health City.

The patients included, 15 months old Nethumi Shenaya Rajapaksha Bomaluwe, 4-year-old Suwini Umeda Shreemali Balasooriya, 5-year-old Purna and 10-year-old Mithun Dilesh Welgamage.

Thalassemia major is a rare genetic blood disorder wherein, the body fails to produce enough red cells and the ones that are formed also die soon resulting in very low haemoglobin levels. These patients need lifelong blood transfusion and lifespan is very short. Sri Lanka faces several challenges while dealing with complex cases, especially those who don’t have any family matched donors for transplant and Narayana Health City offered to help.

The common treatment for thalassemia major is blood transfusion. However, the continuous transfusions can cause complications like iron overload and blood- borne infections. Bone marrow transplant is the curative option and hence the families of the four Sri Lankan children decided to opt for this treatment modality.

For Narayana Health City, it was a challenge to meet, as all previous attempts elsewhere to find matching bone marrow donors in the families of these children had failed. Fortunately, the team could find matching donors for all four children. While Suwini and Purna found saviours in Datri Registry (India), the other two found matching donors from German Registry (DKMS) in London.

Elaborating about the treatment, Dr. Sunil Bhat, Senior Consultant and Head of Paediatric Haematology, Oncology and Bone Marrow Transplant at Narayana Health City,  said, “Apart from finding human leukocyte antigen (HLA) matched donors for all the 4 children the biggest challenge was to ensure acceptance of the stem cells by the recipient’s system. In unrelated bone marrow transplant, unlike in related donors, the genetic makeup and immune systems in the recipient and the donor are very different. Hence the chances for complications both during and post-transplant are very high. Fortunately, in the case of these children their body responded very positively to the transplant and that has helped us to cure them of thalassemia major. He also pointed out that the chances of finding matched donors are far better from same ethnic background. As there are no unrelated donor registries in Sri Lanka, finding a donor for them is a challenge”

Over the years, cases such as these have propelled Narayana Health City to be the most sought-after health destination for both national and international patients. With its state-of-the-art facilities and experienced doctors, Narayana has not only become a center of excellence for heart problems, which it already has earned a name for, but a leading referral centre for a wide array of treatments including bone marrow transplant.

Sharing his joy, Jayantha Boolasooriya, father of Suwini Umeda Shreemali Balasooriya, who is the Secretary of The Thalassemia Society as well said, “Back home thalassemia major is considered as an incurable disease especially for children who do not have related donors. The children depend on blood transfusion and thereby succumb to fatalities very early in life. 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 daughter but also the children of my friends from this dreadful disease.” Mr. Balasooriya also emphasised the need for donor registry in Sri Lanka and having such expertise there in order to help more and more patients.

The Bone Marrow Transplant Unit at the Mazumdar Shaw Cancer Centre, Narayana Health City, is recognized world-over as a leading referral centre for both autologous and allogenic stem cell transplant. The unit has completed more than 775 stem cell transplants, including the complex transplants like Haplo-identical (half matched transplants) and unrelated transplants.

NH Health City is located in Bommasandra, Bengaluru, which comprises of Narayana Institute of Cardiac Sciences (NICS), a superspecialty hospital for cardiology and cardiac surgery, and Mazumdar Shaw Medical Center (MSMC), a multispecialty hospital for cancer care, neurology and neurosurgery, nephrology, urology, and  houses what we believe, is one of India’s largest bone marrow transplant units. NH Health City operates a stem cell bank.

 

 

 

 

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Purna:

Five-year-old boy was diagnosed with Thalassemia Major when he was a few months old. This came as a shock to the family and he was started on blood transfusions every few weeks. Getting blood transfusion every few weeks was a challenge for this young infant as getting intravenous access was a challenge and father had to lose a day of work every time he needed transfusion. Family heard that bone marrow transplant is a potential cure for this condition. Unfortunately there was no HLA matched family donor in the family and hence this hope also faded for the family. Due to blood transfusions Purna started developing iron overload and needed iron chelating medications. Family came to know regarding an option of unrelated donor transplant for a potential cure. Family sought help from Dr Sunil Bhat in this regard and explored the option of unrelated donor transplant. An unrelated donor search was started from Narayana Health City, Bangalore and fortunately an unrelated donor was found in Datri Registry (Indian unrelated donor registry) who was complete 10/10 match. This was a great relief for the family and unrelated donor stem cell donation was facilitated and Purna underwent bone marrow transplant on 08/04/2017. Purna had post-transplant period under close supervision and after a 6 weeks of hospitalization at Narayana Health City, Bangalore was discharged from the hospital. He was on regular and close follow up and is now more than 3 months and cured of his disease. Some unknown donor from India does a voluntary gift of stem cells to save this young boy from Sri Lanka.

 

Suwini Umeda Shreemali Balasooriya:

 

Four-year-old girl was diagnosed with Thalassemia Major when she was just 4 months old. This came as a shock to the family and she was started on blood transfusions every few weeks. Family heard that bone marrow transplant is a potential cure for this condition. Unfortunately there was no HLA matched family donor in the family and hence this hope also faded for the family. Family came to know regarding an option of unrelated donor transplant for a potential cure. Father of this child, in order to help the cause of Thalassemia took the role of Secretary of Sri Lanka Thalassemia Society.  Through the society the father got in touch with Dr Sunil Bhat in this regard and explored the option of unrelated donor transplant. An unrelated donor search was started from Narayana Health City, Bangalore and fortunately an unrelated donor was found in Datri Registry (Indian unrelated donor registry) who was complete 10/10 match. A 22 year old female donor somewhere from India was a complete match with Suwini. This was a great relief for the family and unrelated donor stem cell donation was facilitated and Suwini underwent bone marrow transplant on 02/05/2017. Suwini had post-transplant period under close supervision and after a 6 weeks of hospitalization at Narayana Health City, Bangalore was discharged from the hospital. She was on regular and close follow up and is now more than 3 months and cured of his disease. Some unknown donor from India does a voluntary gift of stem cells to save this young girl from Sri Lanka.

 

Mithun Dilesh Welgamage

 

Ten-year-old boy was diagnosed with Thalassemia Major when he was a few months old. This came as a shock to the family and he was started on blood transfusions every few weeks. Family needed to travel long distances for getting transfusion. Family heard that bone marrow transplant is a potential cure for this condition. Unfortunately there was no HLA matched family donor in the family and hence this hope also faded for the family. Mithun started developing iron overload due to repeated transfusions and needed iron chelating medications. Family came to know regarding an option of unrelated donor transplant for a potential cure. Family sought help from Dr Sunil Bhat in this regard and explored the option of unrelated donor transplant. An unrelated donor search was started from Narayana Health City, Bangalore and fortunately an unrelated donor was found in German Registry (DKMS) in London, who was complete 10/10 match. This was a great relief for the family and unrelated donor stem cell donation was facilitated and Mithun underwent bone marrow transplant on 25/04/2017. Mithun had post-transplant period under close supervision and after an 8 weeks of hospitalization at Narayana Health City, Bangalore was discharged from the hospital. He had quite complex and challenging post-Transplant course. He was on regular and close follow up and is now more than 3 months and cured of his disease. Some unknown donor from London does a voluntary gift of stem cells to save this young boy from Sri Lanka.

 

Nethumi Shenaya Rajapaksha Bomaluwe

 

Fifteen-month-old baby girl was diagnosed with Thalassemia Major when she was a few months old. This came as a shock to the family and he was started on blood transfusions every few weeks. Getting blood transfusion every few weeks was a challenge for this young infant as getting intravenous access was a challenge. As the father of this young baby worked abroad, there was an added burden on the mother. Family heard that bone marrow transplant is a potential cure for this condition. Unfortunately there was no HLA matched family donor in the family and hence this hope also faded for the family. Family came to know regarding an option of unrelated donor transplant for a potential cure through the Thalassemia Society. Family sought help from Dr Sunil Bhat in this regard and explored the option of unrelated donor transplant. An unrelated donor search was started from Narayana Health City, Bangalore and fortunately an unrelated donor was found in German Registry (DKMS) in London,who was complete 10/10 match. This was a great relief for the family and unrelated donor stem cell donation was facilitated and Nethumi underwent bone marrow transplant on 05/05/2017. Nethumi had post-transplant period under close supervision and after an 8 weeks of hospitalization at Narayana Health City, Bangalore was discharged from the hospital. She was on regular and close follow up and is now more than 3 months and cured of his disease.

 

 

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