Even with the surgery meant to alleviate bile salt accumulation, plus the anti-scratching gloves and the anti-itching medications, it was clear that Darcy’s quality of life was not improving.
Around this time, Darcy’s liver doctor, Dr. Jennifer Vittorio, assistant professor of pediatrics in Pediatric Hepatology and assistant attending pediatrician at NewYork-Presbyterian Morgan Stanley Children’s Hospital, introduced another possibility: Living organ donation. Instead of a patient being added to a waiting list for a transplant from a deceased person, doctors can remove up to 15 to 20 percent of an adult’s healthy liver and use it to replace a child’s diseased liver. The donor’s liver regenerates to replace the lost tissue and returns to its normal size in three months. In most cases, donors return to normal activity within about a month.
The Center for Liver Disease and Transplantation performs about 25 to 30 living organ donor procedures a year, with children receiving seven to 10 of the transplants. The center offers a laparoscopic — or minimally invasive — approach. With this technique, there is less pain for the donor, recovery time is shorter, and he or she can go back to work sooner.
“Living donation would allow her to get a transplant to correct the symptoms of her disease long before she would have received a deceased donor organ,” Dr. Griesemer says. “Additionally, the outcomes for pediatric recipients of living donor liver transplants are superior to deceased donor transplants.”
If Peter and Chris could find a willing, compatible donor, the doctors could replace Darcy’s damaged liver.
“We just didn’t know that was even possible … how 15 percent of an adult liver can become a full new liver for a child is just magic,” Peter says. “I mean, it’s science and magic altogether.”