Abu Dhabi [UAE], August 14: For Yahya and Zainab Al Yassi, World Organ Donation Day this year carries deeply personal meaning.
Just a few months ago, their infant son, Baby Ahmed Yahya, faced a grim future, diagnosed with a rare genetic condition affecting his liver and other vital systems. Weighing just 4.4 kilograms and only five months old, Ahmed became the youngest infant in the UAE to undergo a successful liver transplant. The procedure was made possible by the extraordinary courage of a family member and the skill of a multidisciplinary team at Burjeel Medical City (BMC).
The birth of Ahmed, the fifth child, was a moment of joy and hope for the family. He is the couple's first surviving boy after the tragic loss of another son, also named Ahmed in honour of his grandfather, who died in 2010 from liver disease. Hence, when the young Ahmed's liver enzyme levels rose shortly after birth, it raised concern. Though initially expected to stabilize, his condition quickly deteriorated. Doctors at BMC diagnosed him with an 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 the rarity of the condition, there were no clear answers, only tough questions. Yet we had to act," said Dr. Johns Shaji Mathew, Abdominal Transplant and Hepato - Pancreatico - Biliary Surgeon at BMC.
Because of the critical condition, the baby needed an urgent liver transplant and the family looked for a living donor to avoid any delay. As the medical team deliberated over the clinical complexity of performing a liver transplant on such a small child with an uncertain prognosis, hope arrived from within the family. The wife of his father's brother volunteered to be a living donor. Remarkably, she was 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, she gave us life again," said Yahya, Ahmed's father. Ahmed's aunt, who had never considered organ donation before, dove into research and discussions with the transplant team. "I read everything I could find. I realized 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.
The transplant was performed on April 4, 2025, in one of the most technically challenging pediatric surgeries ever conducted in the region. Led by Dr. Gourab Sen, Director - Transplant Surgery, Burjeel Abdominal Multi-Organ Transplant Program & Dr. Johns Shaji Mathew, the team meticulously prepared a mono-segment graft from the donor's liver to fit the tiny abdominal cavity of the infant. Pediatric anesthesia was managed by Dr. Ramamurthy Baskaran, Division Chair of Anesthesia; Dr. George Jacob and Dr. Anshu S. The baby was managed perioperatively in the PICU by Dr. Kesava Ramakrishnan, Consultant, Pediatric Intensive Care Unit and his team.
"This was a precision operation that lasted 12 hours, including the donor and the recipient surgery. We used a mono-segment graft, which is a tiny part of the donor's liver, and shaped it exactly to fit the baby's anatomy. In an infant this tiny, every structure is delicate beyond imagination, each vessel was thinner than a matchstick, and the margin for error was virtually zero. The surgery required not only technical expertise but constant focus, as we were working in millimeters, sometimes even fractions of a millimeter. It is not just a surgical procedure, it is micromillimeter craftsmanship performed under extreme pressure, with every member of the team synchronizing perfectly to keep the child stable throughout," said Dr. Gourab.
Despite the high-risk nature of the operation and the child's fragile condition, the surgery was a success. Baby Ahmed was extubated soon, began feeding within days, and showed excellent liver function. His recovery was carefully supported by a multidisciplinary team including pediatric intensivists, gastroenterologists, dietitians, radiologists, and rehabilitation experts, showcasing the depth of BMC's tertiary and quaternary care infrastructure.
What makes this case exceptional is not just the age and weight of the patient, but the rare genetic diagnosis and the global scarcity of successful transplants in such cases. Ahmed now joins a handful of survivors worldwide who have 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. Gourab.
Today, Baby Ahmed is growing steadily. His liver function continues to improve, and his neurodevelopmental milestones are being closely monitored. Under the long-term care program, he receives specialized nutritional support, immune monitoring, and family counseling.
As the world marks World Organ Donation Day, Yahya reflects on their journey with deep emotion and gratitude: "My baby's recovery is nothing short of a miracle. We were once a family living in fear of losing another child, but today, we are celebrating a second chance at life. I hope our story inspires others to come forward, to learn more, and to consider becoming donors. You never know whose life you might change."
The HAYAT National Program invites the public to learn more about related living organ donation, where a healthy person donates to a family member in need. This life-saving act can shorten waiting times and transform lives. Speak with your healthcare provider and discover how you can give the gift of life.
Source: Emirates News Agency
