UAE: 5-month-old battling rare disease saved with liver donated by aunt

Khaleej Times

4 days ago

At a hospital in Abu Dhabi, a young aunt leaned over her five-month-old nephew, kissing his forehead gently, knowing that in a few hours, a part of her liver would be functioning inside his tiny body.
Baby Ahmed Yahya, weighing just 4.4 kilograms, lighter than a small bag of rice, was hospitalised, and his liver was failing fast. His parents, Yahya and Zainab Al Yassi, had already buried one son to the same illness, and losing another was unthinkable.
'I told myself, if I can be his chance, then I must,' said his aunt. 'It's a bond nothing can break.'
For the parents of Ahmed, World Organ Donation Day this year is more than a date on the calendar. It's a reminder of the day their family's future changed forever.
Ahmed's illness was progressing, threatening to shut down his liver and other vital systems. The diagnosis, ATP6AP1-related congenital disorder of glycosylation, is so rare that fewer than 25 cases have been recorded globally. For the Al Yassi family, the news was not only shocking but painful.
Ahmed was the couple's fifth child and their first surviving boy after losing another son, also named Ahmed, in 2010 to liver disease. 'When doctors told us about his condition, I felt like history was repeating itself,' said Yahya. 'The pain of losing our first son came flooding back.'
Finding a donor
Initially, doctors hoped Ahmed's liver enzyme levels would stabilise after birth, but his condition deteriorated as days passed. At Burjeel Medical City (BMC), a team led by Dr Johns Shaji Mathew, an abdominal transplant and hepato-pancreatico-biliary surgeon, explained the urgency of the situation.
'This disease is a severe, multisystem condition that particularly affects the liver. In Ahmed's case, it was moving towards complete liver failure,' Dr Mathew said. 'Given its rarity, there were no straightforward guidelines, only complex decisions to make under pressure. But we knew one thing for sure — he needed a transplant without delay.'
For a child so small, time was the most critical factor. Waiting for a deceased donor could take too long. The only viable option was a living donor transplant. As the medical team considered the clinical challenges of operating on an infant of Ahmed's size and condition, they found a donor within the family.
The wife of Yahya's brother volunteered to be tested as a potential donor and she turned out to be a perfect match.
'I had never thought seriously about organ donation before,' she said. 'But when I learned that part of my liver could save him, I didn't hesitate. I read everything I could about the surgery, asked the doctors every question I had, and decided to go ahead.'
Surgery of millimeters
On April 4, 2025, BMC's multidisciplinary transplant team undertook the challenging pediatric surgeries performed in the region. Led by Dr Gourab Sen, director of transplant surgery, and Dr Mathew, the operation required extreme precision.
'This was a precision operation that lasted 12 hours, including both donor and recipient surgeries,' said Dr Sen. 'We used a mono-segment graft, a very small portion of the donor's liver and shaped it exactly to fit the infant's anatomy. In a baby this tiny, every blood vessel is thinner than a matchstick, and we are working not in millimeters, but fractions of a millimeter. The margin for error is zero.'
Supporting the surgeons were pediatric anesthesia specialists Dr Ramamurthy Baskaran, Dr George Jacob, and Dr Anshu S., alongside pediatric intensive care consultant Dr Kesava Ramakrishnan and his team. Every stage of the procedure, from preparing the graft to connecting the delicate vessels, required flawless coordination.
Recovery
The surgery was a success. Ahmed was extubated soon after, began feeding within days, and showed excellent liver function. His recovery was closely managed by pediatric intensivists, gastroenterologists, dietitians, radiologists, and rehabilitation experts.
'What makes Ahmed's case remarkable is not just his age and weight, but also the rarity of his diagnosis and the scarcity of successful transplants in such cases worldwide,' said Dr Sen. 'Each decision required balancing scientific uncertainty with the value of human life. The courage of his family and our team work made this possible.'
Ahmed now joins a small number of children worldwide who have survived this very rare condition through transplantation. He continues to receive specialized nutritional support, immune monitoring, and family counseling. His developments are also being tracked closely.
For Yahya, the outcome feels nothing short of miraculous. 'We went from fearing we would lose another son to celebrating his recovery,' he said. 'My sister-in-law gave us life again. I hope our story encourages more people to consider becoming donors. You never know whose life you could save.'