An Emirati teenager who has defied the odds since having a rare genetic disorder diagnosed has had successful kidney transplant surgery in the UAE.
Zayed Al Kaabi’s family, from Al Ain, were told he would never be able to talk or move his body because he suffered from Joubert syndrome, which affects about one in 100,000 newborn children worldwide.
The debilitating disorder affects brain development and also contributes to a range of other health issues including, as in Zayed’s case, kidney failure.
The 14-year-old’s parents refused to accept their son’s outlook would be so bleak. Zayed can now speak and is able to walk after years of therapy and rehabilitation and is able to attend a special needs school.
The syndrome is characterised by underdevelopment of parts of the brain that control balance and co-ordination and a malformed connection between the brain and spinal cord.
Developmental abilities, in particular language and motor skills, are delayed and mild to severe intellectual disability is common.
“When my son was first diagnosed, the doctor told us that he would never speak or move,” his mother, Maryam Al Kaabi, 39, said.
He faced a new blow, however, when his kidneys began to deteriorate, leading his family to seek transplant surgery abroad, a decision they said they regret.
Hospitals in the United States and Germany declined to provide treatment, citing concerns over his long-term care after surgery because he has special needs.
The family went to Germany in December last year for treatment but the hospital declined to operate, despite a donor being in place.
The family were offered a lifeline in the UAE, when Sheikh Khalifa Medical City in Abu Dhabi agreed to do the transplant.
On October 18, Zayed underwent a successful kidney transplant at the hospital.
The kidney was donated by his father and is the first transplant for a child with Joubert syndrome in Abu Dhabi.
“I preferred to go to Germany because Zayed’s disease was so rare, but unfortunately that was the worst decision I had ever made,” Mrs Al Kaabi said.
Dr Muhammad Badar Zaman, head of general, vascular and transplant surgery at Sheikh Khalifa Medical City, carried out the procedure.
“You are best served in your own country,” Dr Zaman said.
“I think the concern that other hospitals had is with perioperative and long-term care.”
Perioperative care is the care given before and after surgery.
“With a child like Zayed with special needs, you never know what to expect.
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“You don’t know for example how they would react to pain or being confined to an ICU bed for several days or how they react to anything and everything.”
Dr Zaman believes that the special bond he developed with Zayed assisted in the success of the operation.
“I must admit that Zayed was a very good boy and I believe that is because of the trust he had in me because of the relationship we developed.”
He said Zayed’s kidney is now functioning well.
“I don’t think I would have been able to go through this without the support of my parents and my mother, who looked after my other son while I was in Germany,” Mrs Al Kaabi said.
Her youngest son Abdulla, 9, also suffers from Joubert syndrome and she is worried that he too will need a transplant soon.
Due to the variety of genes affected by the disorder, the syndrome is widely thought to be under-diagnosed.
Mrs Al Kaabi is delighted with the care her son received.
“I don’t know why in 2018 and after all the advances and successes we see at our local hospitals, we still have little faith in them and believe that going abroad is better,” she said.
“When I decided to have the transplant done in the UAE, almost every person asked, ‘are you sure you want to have it done in the UAE?’.
“Yes, I am 100 per cent sure of my decision because I have seen what other countries have to offer and it doesn’t even compare to the excellent health services and care we have here.”
