Pak boy with rare disorder saved in India

It is a story with a happy ending for both countries - of the successful odyssey of a Pakistani couple to India to get the stem cell treatment to save their only child.

This procedure was unique for two reasons - first the child was suffering from a rare immunological disorder, Familial HLH. Second, it is the first time Indian doctors have done a double cord stem cell transplant with unrelated blood.

High fever, frequent infections and a low blood cell count struck Shaheer Imran when he was barely two months old. A desperate search for a diagnosis and cure led his parents from one hospital to the next in their hometown of Islamabad.

Failure drove them to Karachi, where they found a doctor who suggested they send a sample of the baby's blood to Sweden.

Yet another few months elapsed before the diagnosis of a " rare disease", Familial HLH, was made.

" As the battle for diagnosis ended, the new one of finding a donor and a good hospital to get stem cell treatment began," says Imran Gulzar, Shaheer's father.

Familial HLH is a rare disorder which demands urgent treatment as the body starts destroying its own cells. " Many children succumb to this disorder as it eludes diagnosis. Doctors continue to treat the infections, which are the initial symptoms of the disorder, whereas the root cause lies somewhere else. Familial HLH is only considered when the blood cell count plummets," says Dr Anupam Sachdeva, senior consultant ( paediatrics) at Sir Ganga Ram Hospital, who conducted the transplant on Shaheer along with Dr S. P. Yadav.

Since there was no donor in the family who matched Shaheer for stem cell transplant, the doctors approached the Reliance Cord Bank in Mumbai for cord blood and found two suitable units. On March 15, Shaheer underwent a double cord blood stem cell transplant.

Stem cell therapy involves the introduction of new healthy cells into damaged tissues to target diseases and rejuvenate the body. It is considered both an exciting and controversial treatment.

Healthy cells are either extracted from the patient's body or from suitable donors.

Cord blood stem cell transplants are preferred by doctors because the cells are considered ' nave' and match closely with others.

Shaheer's new cord stem cells began producing white blood cells on the 21st day after the procedure, and platelets a week later.

This is the first time Indian doctors have done a ' double' cord blood stem cell transplant because the stem cells in the best matched cord were inadequate.

" The survival rate is 72 per cent for all transplants, while the mortality rate is 18 per cent. The high success rate at our hospital gives us hope that all kinds of haematopoietic stem cell transplants are possible in India, including unrelated cord blood transplant," says Dr Sachdeva.

The satisfaction of the doctors doesn't come close to the joy and relief of Shaheer's parents. " I can't even begin to describe how grateful and happy we are to be taking a healthy child home," said Gulzar.

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