Indian doctors in UAE save life of 5-month-old boy born with extremely rare liver disease

Just a few months ago, Yahya and Zainab Al Yassi were over the moon to welcome their newborn son, whom they named Ahmed Yahya, which was also the name of their firstborn son, who died in 2010 from liver disease.

But the short-lived joy turned into anguish after Baby Ahmed was diagnosed with a rare genetic condition affecting his liver and other vital systems.

The family had lost their firstborn son to a liver disease in 2010. (Photo: Burjeel Medical City)

Fewer than 25 cases worldwide

He was diagnosed with ATP6AP1-related congenital disorder of glycosylation, which resulted in the infant’s liver enzyme levels rising shortly after birth. According to doctors at BMC, Baby Ahmed suffered from 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,” Dr Johns Shaji Mathew, Abdominal Transplant and Hepato – Pancreatico – Biliary Surgeon at BMC said.

Aunt becomes life-saver

“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,” Yahya, Ahmed’s father, recalled.

An urgent liver transplant was the only option to save the infant’s life and Ahmed’s aunt volunteered to be the donor. “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.

Baby Ahmed’s aunt volunteered to be the donor. (Photo: Burjeel Medical City)

Complex surgery

In April, a team of doctors led by Dr Gourab Sen, Director – Transplant Surgery, Burjeel Abdominal Multi-Organ Transplant Program and Dr Johns Shaji Mathew performed the complex organ transplant surgery, which took over 12 hours to complete.

“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,” Dr Gourab explained.

Despite the high-risk nature of the operation and the child’s fragile condition, the surgery was a success, and according to the doctors, Baby Ahmed’s liver function continues to improve, and his neurodevelopmental milestones are being closely monitored.

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