His best hope lies in a bone marrow transplant, which is not available in the UAE and is too costly for his parents in their native India.
Only transplant can save baby's life
ABU DHABI // Shamsa and Anzar Mohammad have already lost two babies, and with time against them, they are desperately seeking resources to save a third. It was not until last month that the couple, originally from Kerala, India, found out that it was a rare genetic disease that had claimed two daughters and was making their new son, Mohammad Yousaf, so sick. They were relieved to have a name for the condition that has plagued their family for the past five years: Omenn syndrome, a genetic disorder so rare that its occurrence is less than one in 100,000 births.
But they also immediately faced an uphill battle to find the therapy that might save Mohammad, now nine months old: a bone marrow transplant. The couple's nightmare began after their first daughter was born in Kerala. She lived for seven months. Their second girl, born in 2007, lived for nine months. After his wife gave birth at the Corniche Hospital last October, Mr Mohammad told doctors there what had happened to his daughters. He talked about their symptoms and his fears for his newborn son. The medical staff referred him to Mafraq Hospital and, for a while, little Mohammad was fine.
Five months later it began. Mohammad's hair started falling out; his skin grew rough, scaly and dry. He developed wheezing and other breathing problems, along with a dry, incessant cough. "It was the same as the others," said Mrs Mohammad. "Even with the slightest exposure to dust, his lungs could not cope." Around that time, Mr Mohammad learnt about the Patient Welfare Committee set up by the Health Authority-Abu Dhabi to provide care for those who cannot pay for it.
He appealed to the committee, telling its members what had happened to his daughters. The committee approved free medical care for Mohammad at Sheikh Khalifa Medical City (SKMC). Mohammad was admitted and remains at the hospital, where he is fed a stream of high-calorie formula, an anti-fungal agent, and antibiotics through a tiny tube fitted through a nostril. Once a month, he receives an intravenous immunoglobulin treatment. While he is receiving the antibodies that temporarily boost his immunity, Mohammad is usually propped up on a baby car seat.
His mother tries to play with him, to stimulate movement. "I must do it," she said. "Otherwise he does not like it very much." In June, Mohammad's doctors recommended a bone marrow transplant, even as they told his parents it was by no means a guarantee of survival. "They said he had a 50-50 chance of living even after the operation," said his father. "They don't say, 'Sure. He will be OK'." An SKMC official said yesterday that in the interests of patient confidentiality, the hospital does not comment on individual cases. But letters from doctors at the hospital to Mohammad's parents indicate just how grave the baby's situation is.
Patients who do not receive transplants rarely survive, they said, even with the best care. Without treatment, babies with Omenn syndrome generally die within a year. And yet another obstacle: "Bone marrow transplant is not available in the United Arab Emirates; therefore, Mohammad should be transferred to an institution where this procedure for live-saving is offered to him." The Mohammads are still waiting for the results of genetic testing that will indicate whether either of them is a suitable match for their baby.
And as the days pass, they are scrambling to find a way to move their son to a hospital in India that can perform the transplant. But even if they do, it seems almost impossible that they will be able to pay. They have already been told that private hospitals in India charge 1.5 million rupees (Dh114,000) for the operation. That does not take into account the price of flights, accommodation, post-operative care and medicine.
Mr Mohammad is a foreman in a construction company and earns Dh3,000 a month. Mrs Mohammad has observed that usually after a course of treatment with the antibiotics and anti-fungals, her son gets some relief. But after a week his condition deteriorates again. His skin grows itchy, and he tries to scratch it. He is allergic to almost everything, so Mrs Mohammad soothes his skin as best she can with a medicated cream.
Even as small and as sick as he is, Mohammad likes to play. He smiles, and even makes happy noises. "That is how we know he is feeling well," said his mother. "But most of all, he likes listening to music. And then when you call his name, he responds by looking everywhere to see from where someone is calling his name." She stays with her son every day; her husband visits them most evenings after work.
"He only likes his mother," he said. "When she is not around, you should see the way he cries." firstname.lastname@example.org * With additional reporting by Mitya Underwood