Sanjana Praveen Shivanka, the Bubble Baby of Sri Lanka, is now on the threshold of becoming a toddler and is very fond of the few toys cars he has."Amme, amme, kiyanawa," says K.B.N. Damayanthi emotionally, going into detail about Shivanka's development, as over the phone baby talk and laughter can be heard.
His room in their humble home in Dippitigala, Lellopitiya in Ratnapura has been cleared of everything except a mattress, with a "dandu wetak" (small barricade) put across the door. He grabs hold of it and propels himself up and stumbles around the room holding on to the wall, laughs Damayanthi, adding that he loves to play with the toy cars that his father, K.W.N. Neil Shantha, brings for him from his journeys to sell mattresses, the business which is the family's livelihood.
Gripping a car in his tiny hand, Shivanka on his other hand and knees pushes it around his room, crawling and shouting in joy, she says.
Born on July 12, 2010, Baby Shivanka was able to pass the first-year milestone in his young life due to the overwhelming support in cash sent in by Sri Lankans not only here but also abroad to a Fund set up by the Sunday Times.
With the Fund swelling to an incredible Rs. 5.3 million, Baby Shivanka's humble parents, Damayanthi and Neil, were able to take him to the Apollo Speciality Hospital in Chennai, India, for life-saving treatment.
For Baby Shivanka who was suffering from the rare genetic disorder Severe Combined Immunodeficiency (SCID) Syndrome, the only hope was bone marrow transplantation. A few years before his birth, two of his siblings, who were not fortunate enough to be brought into the focus of generous Sri Lankans, succumbed to SCID and are buried in the backyard of their home in Dippitigala, for bone marrow transplantation is not available in Sri Lanka.
Shivanka's plight was brought to the notice of the Sunday Times even before his birth by the kind-hearted doctors of the Human Genetics Unit of the Colombo Medical Faculty, who requested us to help save his life.
With the appeals in the Sunday Times and the outpouring of concern that men, women and children from the far corners of the country and Sri Lankans scattered across the globe turned into currency, Baby Shivanka took wing to Chennai on September 4.
Since then, in and out of hospital not only in Chennai but also back in Sri Lanka, Shivanka has undergone bone marrow transplantation and received regular intravenous immunoglobulin under the care of Apollo's Consultant in Paediatric Haematology, Dr. Revathi Raj assisted by the local team of doctors comprising Consultant Paediatrician Dr. Samanmalee Sumanasena, Clinical Haematologist Dr. Lallindra Gooneratne, Consultant Immunologist Dr. Rajiva de Silva of the Medical Research Institute and Medical Geneticist Prof. Vajira H.W. Dissanayake and Medical Officer Dr. Jagathie Fonseka of the Human Genetics Unit.
When Shivanka was three months he received stem cell therapy - stem cells harvested from his own father, Neil, rather than those from a non-related donor. "The need was to ensure treatment that will bring about the best outcome in the long term," says Prof. Dissanayake.
The final decision on the best treatment option was taken by three teams of doctors - those from the Apollo Hospital, the Great Ormond Street Hospital (GOSH), London, United Kingdom and Sri Lankan doctors.
SCID is a rare disorder, said Prof. Dissanayake, adding that the decision on the best course of treatment for him had to be well thought out. It had to be the one which carried the least danger to his life. (SCID is a disorder in which the immune system's cells, especially T-cells are affected. This makes the person vulnerable to life-threatening infectious diseases spread by viruses, bacteria and fungi.)
Prof. Dissanayake was part of the team in Sri Lanka who identified Shivanka as being affected by SCID before he was born and was instrumental in coordinating his treatment with Dr. Revathi, before he developed any major infections.
Jogging our memories, Dr. Gooneratne who is in touch with Dr. Revathi explains that a stem cell transplant is best performed with donor stem cells which are compatible (closely resemble the patient's stem cells but are not diseased). The source of these stem cells can be from a compatible close relative, a compatible unrelated person (can be difficult to find) or a compatible umbilical cord from a 'cord blood bank'.
For good engraftment (donor's stem cells to replace the baby's diseased cells) to take place, chemotherapy and drugs which suppress the baby's immune system even further have to be given before and after the transplant. This is associated with a significant mortality (risk of death) and side effects, he says, explaining that the transplant team from Apollo Hospital in consultation with experts from GOSH, London, decided on a procedure called 'CD34 selected haplo infusion' of the father's stem cells without the need for any conditioning chemotherapy which would have put the life of the baby at risk.
"This way the transplant related mortality is close to 0% and the baby will not be exposed to chemotherapy with its short and long term complications," explains Dr. Gooneratne.
Many are the others in Sri Lanka who have contributed to keeping the baby alive, in addition to the team actively involved still. They include Genetic Nurse P.K.D.S. Nisansala of the Human Genetics Unit; the gynaecological team both doctors and nurses headed by Dr. Athula Kaluarachchi and the paediatric team both doctors and nurses headed by Dr. Sumansena of the De Soysa Hospital for Women; and Consultant Paediatrician Dr. H.T. Wickramasinghe and the nursing staff of Asiri. It was SriLankan Airlines which provided the return air tickets free of charge the first time the family flew to Chennai.
While the Bubble Baby steps into the second year of his life, with more visits to the Apollo Hospital in Chennai needed to continue his treatment regimen, he also faces hurdles in the form of coughs and colds that make him very ill -- more so than normal babies -- that still send him into local hospitals.
Not only the birthday wishes of this nation but also wishes and prayers for his good health are with Baby Shivanka whom Sri Lanka has literally "adopted" as its own.
The fund still open
If anyone wishes to help his parents in view of the high costs of treatment, the Fund set up by the Sunday Times is still open. Please send your contributions to Account 0007283471(Wijeya Newspapers Ltd.) at the Bank of Ceylon, Lake House Branch, D.R. Wijewardene Mawatha. |
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