x Abu Dhabi, UAEMonday 24 July 2017

Baby Mohammad Yousaf dies in India

Complications result in another tragedy for couple who have lost three children born with a rare genetic disorder.

Baby Mohammad Yousaf, pictured in Abu Dhabi earlier this month, has died in India.
Baby Mohammad Yousaf, pictured in Abu Dhabi earlier this month, has died in India.

Mohammad Yousaf, the "bubble baby" whose parents took him to India this month in the hope of a bone marrow transplant that would cure a rare disease, has died. The death of nine-month-old Mohammad followed complications from pneumonia, an illness to which he was particularly vulnerable. He had Omenn syndrome, which cripples the immune system and leaves sufferers unable to fight illness. His parents, Anzar and Shamsa Mohammad, have now lost all three of their children, each of whom had the genetic disorder. The couple could not be contacted yesterday. Friends who had spoken to them on Thursday, when Mohammad died, said they were carrying out the last rites for their son and would be spending the day in the mosque.

Ansari Sainudeen, a family friend in Dubai, said he received a text message from Anzar telling him that Mohammad's condition had suddenly and drastically deteriorated. By the time Mr Sainudeen got through to Anzar, Mohammad, who had been put on a ventilator to help him breathe, had died. "I don't know what exactly happened," said Mr Sainudeen. "All Anzar told me was that he was suddenly in a vulnerable stage and the pneumonia had really affected Mohammad's breathing." Children with Omenn syndrome are often referred to as "bubble babies" because they need to be kept away from any possible source of infection. Few survive beyond infancy unless they have a bone marrow transplant, a procedure that is not available in the UAE.

Mohammad's parents - who are from Kerala but live in Madinat Zayed, Al Gharbia - had gone against doctors' advice by taking the boy to India in a last-ditch attempt to find a bone-marrow donor. Doctors feared that viruses and bacteria, which a healthy child could shake off, might kill Mohammad if he encountered them on the journey. After reaching Trivandrum, Kerala, the family took a 16-hour train journey to reach Vellore, a city near Chennai in Tamil Nadu, for his planned transplant operation at Christian Medical College. Mohammad "had coped well" with the journey, his father had said. Until last week, he had responded well to treatment for skin rashes and other infections as the hospital prepared him for surgery, while his relatives had bone-marrow tests. A successful transplant would have enabled Mohammad to develop an immune system. He had already spent five months in hospitals in Abu Dhabi, including Sheikh Khalifa Medical City, where he was kept in isolation while doctors determined his condition. In June, when doctors diagnosed Omenn syndrome, his parents were finally able to understand the deaths of their other two children, both girls, who died in infancy after displaying similar symptoms, including skin rashes, a lack of immunity and breathing difficulties.

After Mohammad's story appeared in The National, friends and wellwishers raised funds to pay for a transplant, which would have cost 15 million rupees (Dh114,000) at the Indian private hospital. Personal donations totalling Dh80,000 (US$21,780) were received. Mr Sainudeen, an advocate with Al Fajer legal consultants in Dubai, offered his services free of charge to the family, and helped them to obtain medical and government documents to transfer Mohammad between hospitals and countries. The family flew to Trivandrum from Abu Dhabi on August 10 after an anonymous donor provided the tickets. One wellwisher, Deepti Bherwani, said she was shocked to hear of Mohammad's death. For the past week, she had been trying to contact the doctors at the Indian hospital who had told Anzar that, in the event of arranging for an outside bone marrow donor, if there were no matches from the family, the cost of a transplant would double.

"I just wanted to talk to the doctors to see what was going on," said Ms Bherwani. "I don't know what went so wrong. I am not able to accept this, that suddenly he got pneumonia and things turned so bad. I want the doctors to provide a proper explanation of what they did. "He was fine here. His journey was the most difficult part and he even overcame that. "I understand that God has different plans for everyone. At the end of the day, we don't get what we want, and in our way. But we all wanted the best for the baby." Another anonymous donor said she had received regular updates on Mohammad's condition from his parents. "We all knew it was going to be a tough journey but without trying, they had no hope," she said. "Anzar had the guts and determination to get him to Chennai and it is just heartbreaking for him and his wife." Later, in an e-mail sent to others who were following Mohammad's progress, she wrote: "Our thoughts and prayers are with them and we know that they are truly grateful to you all for your compassion and generosity." Mr Sainudeen said the couple were expected to return home next week, after which they would discuss what to do with the remaining donations. "There were lots of expenses incurred during their time in India, while Mohammad was in the hospital," he said. "I don't know what Anzar will do, but he was in no condition to address any of these matters at the moment." sbhattacharya@thenational.ae