A family whose two sons survived heart transplants may soon have to relive their ordeal after it emerged that their eight siblings also carry a gene that is likely to lead to cardiac failure.
Hamad Yahyaee, 18, and his brother, Mohammed, 17, both underwent lifesaving surgery in India after becoming gravely ill within weeks of one another.
The Emirati teenagers both suffered from cardiomyopathy, a disease that leads to the heart muscle to become enlarged, thick or rigid. This makes it weaker and unable to pump enough blood to the organs and throughout the body. As the heart fails, fluid builds up in the lungs, ankles, legs or abdomen, leaving the patient in terrible pain.
“My sons are alive after being so close to death," said their father, Sultan, 41, speaking from his home in Al Ain.
"They are moving and sitting with us, after months of just lying in bed in agony."
The brothers are now both healthy, but their two brothers and six sisters may well need similar treatment, if matches can be found.
Read more: Severe version of heart condition meant only a transplant could save Emirati teens' lives
[ New UAE donor list will mean fewer foreign operations, say doctors ]
Tragically, the gene they carry was only discovered when their younger brother, Majid, quickly became ill in 2013. Despite being flown to the US for a transplant, he died days before the operation.
“He started feeling very tired and his body became bloated," said Sultan.
"Majid had been a healthy young boy until then."
It was a few months later that Hamad and Mohammed started showing similar symptoms. Their condition deteriorated over time.
“Right up until the transplant our lives were a nightmare. Hamad and Mohammed were almost dead bodies.”
The slightest movement was strenuous, the father said.
“All they could do was eat and go to the bathroom. They couldn't even climb two steps,” he said.
The boys were put on medication and told they would eventually require a transplant. Meanwhile, their father applied to the government to cover the costs of surgery for his sons abroad, since the UAE did not have a programme for heart transplants.
“I don't think anyone can imagine what my family was going through. I had one son at a hospital in Al Ain, Mohammed, and the other, Hamad, in Abu Dhabi, because his condition was worse. The best place for him was Cleveland Hospital Abu Dhabi.
"We were told that they could die at any moment and should be ready to take them abroad for a heart transplant. It was a nightmare. To be told that you should be ready that at any moment your sons could die.”
Hamad was admitted into intensive care for two months, before being flown to Gleneagles Global Health City Hospital in Chennai last September.
“He suddenly experienced liver shock caused by a shortage in blood and oxygen,” Sultan said and Mohammed also deteriorated.
“I guess you can say that we are lucky, that both my sons were taken to the same hospital at the same time and both had the surgery with the same doctor,” Sultan said.
Hamad’s surgery was preformed on March 9 of this year and Mohammed’s was a month later, on his birthday, April 11.
His sons were lucky. In India, citizens have priority over foreign patients for organ transplants.
Only when there is no domestic recipient can the organ pass to an international recipient – and that is based on a waiting list, patient seniority and severity of the disease.
“We were told that it could take years to find a donor. It meant life or death for my boys,”
But a donor was available for Hamad and soon after another for Mohammed. The operation was a success and the boys returned to the UAE two days before the Eid holidays, after months of recovery.
Sultan has had his other children tested.
“We were told all eight carry the gene for the cardiomyopathy. All six of the girls will eventually require a transplant, but its too soon to tell for the two boys,” he said.
Saif is six, and Majid, named after his elder brother, who passed away, is three.
“If the option for a transplant is not available in the UAE then I would like to have it India.”
There will be some happiness and laughter in the family home soon, as Hamad is to be married in two months' time. He remembers little of his three months in India.
“All I remember is seeing my mum's face before going into the operation.
"I am grateful to the man who gave me his heart. I am sorry for his death but I hope it's a consolation for his family to know that his death gave another man life,” he said.
“I hope that my sisters will have the same chance,”
salnuwais@thenational.ae
