"He was the only doctor to take an interest," Moore said.
Children needing transplants face different challenges than adults, most notably, the lack of pediatric organs, said Richard Hasz, vice president of clinical services for Gift of Life, the nonprofit organ and tissue donor program that serves Delaware, southern New Jersey and eastern Pennsylvania. When a child receives a pediatric organ, it's because another child has died and the family has agreed to donation. About 60 percent of families who lose a child say yes to donation when given the opportunity, Hasz said, but it requires the family to make a difficult decision during an already agonizing time.
Nationwide, there were 613 liver transplants performed on children under the age of 18 last year, according to statistics from the Organ Procurement and Transplantation Network.
Technical aspects of the transplant operation also present challenges. Blood vessels are smaller in children than adults, complicating the surgery. Kids also tend to get sick more from colds, the flu and other ailments than adults, and those illnesses can increase their risk of transplant-related problems, Dunn said. But in general, children's bodies accept transplants pretty well, increasing their chances for long-term survival. In many cases, children undergoing transplants eventually get off the immune-suppressing drugs that reduce the chances of the body rejecting the transplanted organ.
One of the biggest causes of liver transplants in children is biliary atresia. It occurs in newborns when the common bile duct between the liver and the small intestine is blocked, damaged or never formed before birth. About 90 percent of children diagnosed with the condition will need a transplant, usually by the time they are 2, Dunn said. Autoimmune diseases and some metabolic conditions also can cause illness in children to the point that a transplant is needed.
Hepatoblastoma typically is one of the rarest causes for a liver transplant, but because of Dunn and his team's expertise in dealing with the condition, 15 of the 100 liver transplants at duPont Hospital have involved children with the disease.
Locally, 66 children are on the United Network for Organ Sharing waiting list, mostly for livers, kidneys and hearts, Hasz said. There's no set amount of time that a child will wait because the list is driven by who is in most critical need. For example, children with hepatoblastoma who don't get a liver within the first month on the list are bumped up to higher priority because of the severity of their condition.
In Ellison's case, he waited more than a month without an offer of a liver. Plans were readied for his mother to donate about 20 percent of her liver — the amount needed for a child's liver to function — through a procedure called a living donor transplantation. But late last month, just before Moore was to donate, a donor liver from a 2-year-old child was made available.