Zeenia (with father), Rayan (in mother’s lap) and Dr Sunil Bhat.

BENGALURU: Eight-month-old Rayan from Pakistan became the youngest donor of bone marrow in India after the infant saved life of his elder sister, two-year-old Zeenia who was suffering from a rare disease, Haemapha­gocytic Lymphohistio­cytosis (HLH).

Her bone marrow produced some abnormal cells which were eating away her normal marrow cells for which bone marrow transplant was the only cure. Two months after the successful bone marrow transfer in a city hospital, the two siblings are doing well and will be returning to Sahiwal with their relieved parents in a few days.

Everything was fine for Zeenia until she completed her first 11 months when she began suffering from high persistent fever which was not cured by antibiotics.

On detailed screening, she was diagnosed with the rare bone marrow ailment with high fever, low blood counts and liver and spleen enlargement, considered a life-threatening disorder. She was also diagnosed with partial albinism since birth.

Zeenia’s condition came as a rude shock to her parents as they were told that the disease was not curable. “Back home diseases like Haemaphagocytic Lympho­histiocytosis are mired with misconceptions. There is a perception that it is not curable.

“In fact we had given up all hope till we happened to hear about a similar case being treated at the Narayana Health City [NHC]. We are glad that we could make this trip to India and are grateful to the entire team of doctors who saved our daughter’s life,” said Ziaullah, her father.

After Zeenia, whose condition deteriorated due to the recurring infection coupled with the journey from Pakistan to India, was admitted to the hospital and was stabilised, her eight-month-old brother turned out to be a complete HLA match for her. However, Rayan was just an infant and what the haematologists at the NHC did was pretty challenging.

Dr Sunil Bhat, senior consultant and head of paediatric haematology, oncology and bone marrow transplant at the hospital, said, “The case was very challenging from the donor’s perspective as he was just eight months old. Typically their bones are very soft and supplying and extracting the stipulated dosage added to our challenge.

“It is risky to extract more than 15 to 20ml per kg of body weight in one go from an infant like Rayan. Hence, we had to do it in two steps with a time gap of six weeks between the two extractions.

“By using small marrow extraction needles, our able team of anaesthetists could successfully extract enough bone marrow that cured Zeenia. Rayan, who was put on iron supplements and adequate nutrition post-bone marrow extraction to face the loss of bone marrow, has not only saved his sister’s life but has also become the youngest marrow donor in our country,” added Dr Bhat.

Dr Sharat Damodar, senior consultant haematologist and clinical director at the NHC, said: “We are glad that we are being able to help a large number of patients from Pakistan as well as other countries by offering them quality treatment. Just over a decade ago, two-year-old Noor Fatima had come to our facility from Lahore and got cured of her congenital heart disorder. And now it is our little Zeenia.”

“We are planning to start an online page once we return to Pakistan and share our story there with the public at large so that the page becomes a platform to create awareness about this illness in Pakistan along with its possible treatment,” said Ziaullah.

By arrangement with the Times of India

Published in Dawn, December 17th, 2016