By Fathima Riznaz Hafi
The Central Hospital celebrated the successful execution of bone marrow transplants and the subsequent survival of four children under their care recently at the hospital premises.
Having faced one of the most challenging and frightening experiences of their lives with courage, these children were applauded at the event. Also sharing the limelight was the dedicated staff who worked tirelessly through this journey and the brave donors without whom this triumph could not have been possible.
A Bone Marrow Transplant (BMT) unit treats blood and bone marrow related disorders. BMT will be beneficial to children and adults with both inherited and acquired blood disorders including blood and bone marrow cancers such as leukaemia, lymphoma and myeloma. The Central has the first and only Bone Marrow Transplant unit in Sri Lanka run by a professional team of medical and nursing staff.
BMT the only curative option
Thalassaemia is a blood disorder that requires treatment for life. Children diagnosed with thalassaemia require monthly blood transfusions. Treatment starts as early as six months of age and goes on for the rest of the patient’s life. In addition they require iron chelation which is injections five to six times per week and/or oral medication daily for life. The cost of treatment increases significantly with age.
“BMT is the only cure for many blood disorders such as thalassaemia, leukaemia, bone marrow failure syndrome, etc.,” said Consultant Haematologist Dr. Lalindra Gooneratne. “The first BMT was performed more than 50 years ago. Since then thousands of patients worldwide have been cured but unfortunately many Sri Lankans have died due to the fact that this was not available in Sri Lanka.”
Until recently patients had to travel abroad for the transplant. Not everyone has that option due to the extremely high cost involved. The Central offers a cheaper and more convenient alternative with the first bone marrow transplant unit set up in Sri Lanka.
“The former Minister of Health Maithripala Sirisena who is now the President of Sri Lanka opened the unit in June 2014. We did this in collaboration with an Italian company called ‘Cure the Children Foundation’ who supported us in establishing this,” Dr. Gooneratne said.
A bone marrow transplant is a very complex and complicated procedure. A lot of training and expertise is needed to make this happen. He commended the dedicated team of nurses who were one of the main strengths of their team.
The surgery carries the risk of the patient dying during the process; hence this achievement is a highly noteworthy one. After the surgery it is essential that the patient be in very sterile surroundings as there is a high risk of infection. Central Hospital provides the required environment for this purpose, he said.
“This is just the beginning of a whole new era of curing patients with bone marrow disorders in our country,” he noted. “BMT is no longer ‘experimental’ at the Central Hospital unit. 50-100 patients will benefit by BMT each year.”
He added that the Clinical Haematology and Bone Marrow Transplant unit treats not only thalassaemia but also other conditions such as ‘multiple myeloma’, ‘aplastic anaemia’ and ‘lymphoma’.
Current situation in Sri Lanka
Explicating the current situation of thalassaemia in Sri Lanka and the cost involved in the management as well as the services available, Consultant Paediatrician Dr. Ruwangi Dissanayake said, “In a survey by the Ministry of Health in 2011 it was revealed that the total number of patients with thalassaemia in Sri Lanka was 1,547. Every year 60 to 80 new children with thalassaemia are born and considering the services that are provided free of charge for our patients, the cost of maintenance for one patient with thalassaemia is approximately Rs. 500,000 each year. If we take the life expectation of about 40 years, the Government is paying up to Rs. 20 million per patient.”
Thalassaemia services are coordinated by the National Thalassaemia Council of the Ministry of Health through the National Thalassaemia Prevention program. Pre-natal diagnosis is available but termination is not legalised. There is a prevention program which is also conducted by the Ministry of Health, where population based screening is done and national guidelines are available.
“Treatment is available to all patients free of charge; this includes blood transfusion, iron chelation, free infusion pumps and all other healthcare services, provided by the Ministry of Health. Thalassaemia treatment centres are available in Sri Lanka, where we have regional centres; with Kurunegala and Ragama predominating and we also have some centres with thalassaemia units, such as Lady Ridgeway Hospital,” she said.
The Central has successfully performed BMT on four children between the ages of 6 and 13 years. They are Mohamad Rizni, Thasuni Himansa, Charuni Apsara and Malith Jayashan. All four children were treated free of charge. The Daily FT spoke to the family of seven year old Mohamad Rizni. According to Dr. Gooneratne, “He has had over 70 blood transfusions over the years, many injections and lots of tablets.” His mother told the FT that having been diagnosed at the age of five months at Chilaw Hospital, Rizni had been going to the hospital once every month for blood transfusions.
He was brought to Central Hospital six months ago, at the age of six, where the operation was performed for free, under the care of Dr. Gooneratne and Dr. Dissanayake.
“He is now seven years old, has been successfully cured and has not gone for any further blood transfusions – he doesn’t need those anymore,” his mother said. “We take him to Lady Ridgeway Hospital once a month for checkups, tests and consultation, under the supervision of Dr. Dissanayake,” she added.
The donor who made this possible was Rizni’s courageous older sister, Fathima Maajidah, who was only 11 at the time of the surgery. “We have three children and our oldest girl just finished her ‘A’ Levels; Maajidah is still schooling but we won’t be sending Rizni to school for a year. He needs time,” his father said.
Thasuni is also seven years old and her donor was her sister Thathsara. 13 year old Charuni’s donor was her older brother Akila. Malith was not present at the event but is also doing very well.
Charuni had a little speech prepared; she stood boldly in front of the audience and read: “I faced a Bone Marrow Transplant on 16 August. I have experienced a lot; during that time I was in serious condition and I got afraid a lot but I faced it very well. Dr. Uncle, Dr. Aunt and the nurses gave me a huge amount of courage at that time. Sometimes I bothered them a lot although they were always with me. I’m so happy. Now I’m very well because of all of you who are in front of me. The life I spent in Central Hospital gave me wonderful memories. I wish you all the best to cure many patients like me.”
The celebration ended with the cutting of the cake that was baked especially for the young heroes, followed by the distribution of gifts to the children as well as their donors, while gift vouchers were presented to their parents.
Pix by Lasantha Kumara