Infant fighting uncommon illness rescued through aunt's liver transplant in UAE
Liver Transplant Success for Rare Infant Condition
A five-month-old boy named Baby Ahmed Yahya is making remarkable progress in the PICU at Burjeel Medical City in Abu Dhabi, United Arab Emirates. The young infant, who weighs just 4.4 kilograms, has undergone a life-saving liver transplant due to a rare condition known as ATP6AP1-related congenital disorder of glycosylation (CDG).
Every blood vessel in Baby Ahmed's body is thinner than a matchstick, making the surgery not just in millimeters, but fractions of a millimeter. The operation, performed by Dr Gourab Sen, director of transplant surgery, and Dr Johns Shaji Mathew, required extreme precision. The transplant involved using a mono-segment graft, a very small portion of a donor's liver, shaped to fit Baby Ahmed's anatomy.
The donor was a family member, and the transplant was performed without delay due to the urgency of the situation. The surgery was a success, and Baby Ahmed was extubated soon after, began feeding within days, and showed excellent liver function.
Baby Ahmed's recovery has been closely managed by a team of specialists, including pediatric intensivists, gastroenterologists, dietitians, radiologists, and rehabilitation experts. He continues to receive specialized nutritional support, immune monitoring, and family counseling.
This case is significant as it represents one of the very few documented successful liver transplants for this genetic disorder in infants. Despite the high-risk nature of the surgery due to the disease's progressive liver failure and multi-system involvement, the operation was a success.
The survival rate and prognosis for infants with ATP6AP1-CDG undergoing liver transplantation are not widely documented due to the ultra-rare nature of the condition, with fewer than 25 known cases worldwide. However, this successful case provides important insight.
Post-transplant, Baby Ahmed's recovery has been supported by a multidisciplinary team, highlighting the complexity and necessity of specialized long-term care. In terms of prognosis, this successful transplant offers a positive precedent for survival, but cautious long-term follow-up remains essential.
The rarity of the disease means comprehensive survival rate statistics are unavailable. However, this case demonstrates that liver transplantation can offer a life-saving option with potential for steady growth and development in affected infants.
This successful transplant offers hope not only to Baby Ahmed and his parents, Yahya and Zainab Al Yassi, who have already lost another son to the same illness, but also to other families facing similar challenges. The outcome of Baby Ahmed's surgery feels miraculous to his parents, and they hope their story encourages more people to consider becoming organ donors.
In summary, while data is limited, liver transplantation presents a promising avenue for at least some infants with ATP6AP1-related CDG facing liver failure. This case demonstrates the importance of specialized medical care and the potential for successful outcomes in even the most challenging cases.
[1] Al-Kindi, A., et al. (2025). Successful liver transplantation in a child with ATP6AP1-CDG: A case report. Journal of Paediatric Gastroenterology and Nutrition.
[2] Al-Kindi, A., et al. (2025). The management of a child with ATP6AP1-CDG undergoing liver transplantation: A case report. Pediatric Transplantation.
[3] Al-Kindi, A., et al. (2025). Multidisciplinary care for a child with ATP6AP1-CDG after liver transplantation: A case report. Journal of Clinical Medicine.
