Miracle: Mom of 5 donates in rare genetic case; family lost son before; 12-hour surgery
For Yahya and Zainab Al Yassi, this year’s World Organ Donation Day carries deeply personal meaning. Just months ago, their infant son, Ahmed, faced a life-threatening future after being diagnosed with a rare genetic condition affecting his liver and other vital systems. Weighing just 4.4kg and only five months old, Ahmed became the youngest patient in the UAE to undergo a successful liver transplant. The procedure was made possible by the extraordinary courage of his aunt Haifaa – a mother of five – and the skill of a multidisciplinary team at Burjeel Medical City (BMC) in Abu Dhabi.
I realised that donating part of my liver could save his life, and I knew I had to do it. It’s a bond that nothing in this world can breakHaifaa
Ahmed is the Emirati couple’s fifth child – and their first surviving son after the loss of another boy, also named Ahmed in honour of his grandfather, who died in 2010 from liver disease. So, when the newborn’s liver enzyme levels rose shortly after birth, alarm bells rang.
Although doctors initially hoped the levels would stabilise, his condition quickly deteriorated. Tests confirmed he had ATP6AP1-related congenital disorder of glycosylation – an ultra-rare genetic disorder with fewer than 25 known cases worldwide.
“This disease is a severe multisystem condition that particularly affects the liver. In Ahmed’s case, the disorder was progressing rapidly toward liver failure. Given its rarity, there were no clear answers, only tough questions. Yet we had to act,” said Dr Johns Shaji Mathew, Abdominal Transplant and Hepato-Pancreato-Biliary Surgeon at BMC.
I still remember the pain when we lost our first son to liver disease.Yahya Al Yassi
With the clock ticking, the family began searching for a living donor to avoid any delay. Hope came from within: Haifaa, the wife of Ahmed’s paternal uncle, stepped forward. She proved to be a perfect match.
“I still remember the pain when we lost our first son to liver disease. When we heard our second son had a similar problem, I thought this was our destiny. But the doctors at BMC gave us new hope. And my sister-in-law gave us life again,” said Yahya.
Haifaa, a 37-year-old mother of five, had never considered organ donation before.
“I read everything I could find. I realised that donating part of my liver could save his life, and I knew I had to do it. It’s a bond that nothing in this world can break,” she said.
It is not just a surgical procedure, it is micromillimetre craftsmanship performed under extreme pressureDr Gourab Sen
The transplant took place on April 4, in one of the most technically challenging paediatric surgeries ever performed in the region. Led by Dr Gourab Sen, Director – the Transplant Surgery, Burjeel Abdominal Multi-Organ Transplant Programme and Dr Mathew, the team prepared a mono-segment graft from the donor’s liver to fit the infant’s tiny abdominal cavity.
“This was a precision operation that lasted 12 hours, including the donor and the recipient surgery. In an infant this tiny, every structure is delicate beyond imagination, each vessel thinner than a matchstick. The margin for error was virtually zero,” Dr Sen said.
The surgery required not only technical expertise but constant focus, as doctors were working in millimetres, sometimes even fractions of a millimetre.
“It is not just a surgical procedure, it is micromillimetre craftsmanship performed under extreme pressure, with every member of the team synchronising perfectly to keep the child stable throughout,” Dr Sen underlined.
Paediatric anaesthesia was handled by Dr Ramamurthy Baskaran, Division Chair of Anaesthesia, along with Dr George Jacob and Dr Anshu S, while the patient was perioperatively managed in the PICU by Dr Kesava Ramakrishnan, Consultant, Paediatric ICU, and his team.
Despite the complexity and high risks, the surgery was a success. Ahmed was extubated shortly afterwards, began feeding within days, and showed excellent liver function. His recovery has been supported by a multidisciplinary team of paediatric intensivists, gastroenterologists, dietitians, radiologists, and rehabilitation experts.
What makes this case exceptional is not just the patient’s age and weight, but the rare genetic diagnosis and the global scarcity of successful transplants in such cases. Ahmed joins a handful of survivors worldwide to overcome this ultra-rare condition through transplantation.
“Each decision we made involved balancing scientific uncertainty with human life. The courage of the family and the coordination of every department at BMC made this miracle possible,” said Dr Sen.
Today, Ahmed is growing steadily. His liver function continues to improve, and his neurodevelopmental milestones are being monitored. He remains under a long-term care plan, including specialised nutrition, immune monitoring and family counselling.
As the world marks World Organ Donation Day on August 13, Yahya reflects with gratitude.
“My baby’s recovery is nothing short of a miracle. We once lived in fear of losing another child. Today, we are celebrating a second chance at life. I hope our story inspires others to consider becoming donors. You never know whose life you might change,” Yahya added.
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