Twenty-two months ago, Jocelyn and Darrell Cooley welcomed their new son Joshua into the world, but their joy was short-lived. About three days later, they came to UNC Hospitals.
"They were telling us that our son had a very deadly disorder called urea cycle disorder," said Darrell Cooley.
With urea cycle disorder, the liver fails to remove ammonia from the bloodstream. When high levels of ammonia reach the brain, it causes irreversible damage, coma or death. Constant medication could only buy them time.
"At about six months, you know, they started to talking about a liver transplant," said Darrell Cooley.
Unlike some other organs, the liver can come from a living donor with a good blood match. With an adult-to-adult liver donation, the donor must give up 50 percent to 60 percent of their liver. For adult to child, only a third of the liver is required.
"Within three to six months, amazingly, the liver in both the recipient and the donor will have regenerated to near normal size," said UNC transplant hepatologist Dr. Paul Hayashi.
Even with a parent-to-child liver donation, there's a risk to the life of both donor and recipient, but that was not a concern for Darrell Cooley.
"You know, this is for my child. Either way, I was going to do it at all costs," he said.
Now, almost a year later, Joshua has cerebral palsy, due to the effect of ammonia on his brain after birth, but otherwise he's healthy and doing well. The experience inspired the Cooleys to help UNC raise awareness for organ donation.
The hospital's lobby features a large wall of photographs of people on the transplant waiting list. For many of them, a donor organ will not come soon enough.
"We lose a lot of people waiting for livers, unfortunately," Hayashi said.
In Cooley's case, the donor came from within the family, but minorities often face a tougher time waiting for a donor. African-Americans, Hispanics and Asians make up 30 percent of the organ donation waiting list, but they are among the least likely to sign up as organ donors.
In some cases, researchers said an organ donor of the same race offers the best possibility for a match.
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