WFBMC researchers say intellectual disability should not prevent kidney transplants in children

WINSTON-SALEM, N.C. -- Dylan Hill has lived a shorter life than most, only 11 years so far. But he’s already died 19 times, and his parents say, perhaps even more.

“They said he died over 17 times before I met him,” said Dylan’s mother, Donna Hill. “He died and they brought him back.”

Dylan was born with several medical conditions, including a brain breathing issue which led to a tracheotomy, but also to brain damage. In addition, Dylan was suffering from Bronchio Oto Renal Syndrome, which his mother says left him with no kidney function.

Donna and Danny Hill officially adopted Dylan on Mother’s Day of 2008. It was around this time that the Hills began to realize how difficult it was going to be to get Dylan a kidney transplant.

“What he had to go through, just for a kidney transplant, really blew me away,” Hill said.

Transplants for people with intellectual disabilities are a controversial issue. Many centers exclude such patients from consideration for transplants for a variety of reasons, including a decreased life expectancy, a belief that patients with intellectual disabilities are at a higher risk for non-adherence with any medical regimen and a suggestion that mental retardation may result in non-adherence with follow-up appointments and medication, according to physicians with Wake Forest Baptist Medical Center.

“These transplants give these children the life that they deserve,” Hill said.

But, Wake Forest Baptist Medical Center is also where Dylan got a new lease on life, with a transplant, when he was about 2 years old.

“The transplant has helped him tremendously, both from a health issue, medical standpoint, but also developmental and social,” said Dr. Ashton Chen, of Wake Forest Baptist Medical Center.

Chen is the lead author of a study done by Wake Forest Baptist researchers, where they studied all 72 children who received kidney transplants at the medical center during a 10-year period. Their conclusion is that children with intellectual disabilities can have similar, if not better, outcomes as non-disabled children. They say if the patient has an adequate support system of committed family members and caregivers, children with intellectual disabilities should be considered as transplant candidates.

“When you see what he’s like now, from what he was before the transplant, it’s very obvious,” Chen said.

Dylan’s family says he enjoys camping, plays Miracle League baseball and is testing above grade level in some subjects.

“He reads, he does math, he learns how to count money, he can do everything,” Hill said.

“It’s very rewarding to see that and I think Dylan is a great example of the benefit that a transplant can have,” Chen added.

Hill said Dylan has brought “so much joy” to her family’s lives and Dylan’s will be “just as normal as can be.”

“Everything that this child’s been through and never complained,” Hill said. “It showed us that that’s what we’ve got to do.”