NJ parents see hope after transplant denial outcry

By Patrick Walters

Associated Press

Published: Tuesday, Jan. 31 2012 1:20 p.m. MST

PHILADELPHIA — A 3-year-old girl whose parents claimed she was denied a kidney transplant at one of the nation's top children's hospitals because of her mental disability is now being considered for the procedure, her father said Tuesday.

Joseph Rivera said he and his wife, Chrissy, met with doctors at Children's Hospital of Philadelphia on Friday and were told they are now willing to consider a transplant for their daughter, Amelia. The Stratford, N.J., family said doctors initially told them their daughter wasn't eligible for a transplant because of her quality of life and her mental condition.

"At this point, we're moving forward," Rivera said in an interview with The Associated Press. "They are allowing us at least to go through the process."

Rivera said his daughter will now have to go through screenings to see if she's a good transplant candidate. He and his wife will now be going in for tissue testing in March.

"We knew going in that it was a long process," Rivera said, adding that his daughter is a "healthy kid." ''She's doing great right now."

A hospital spokeswoman didn't immediately comment on the status of the case, which led to a public outcry after Chrissy Rivera wrote about it on her blog this month.

The hospital has said it "does not disqualify potential transplant candidates on the basis of intellectual abilities." It has also said it is "deeply committed" to providing the best possible medical care for all children, including those with disabilities.

Amelia Rivera, who goes by the nickname Mia, was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. She will need a transplant in six months to a year.

The issues over how doctors determine eligibility for kidney transplants are complex and there is no federally mandated policy on who can have a transplant and who can't, according to Dr. Robert S. Gaston, president of the American Society of Transplantation and medical director of the kidney transplant program at the University of Alabama at Birmingham.

Gaston said, however, that he had not heard of a cognitive deficit alone being considered as a factor in a transplant case. More often, the factors considered involve whether the patient has problems that would make surgery risky or whether they have a caregiver who will make sure that they take the needed medications.

"People who have a committed caregiver, a parent who is going to make sure they have the medications ... those produce the very best outcomes in kidney transplantations," he said.

Arthur Caplan, director of the University of Pennsylvania's Center for Bioethics, said transplant teams are often looking at candidates who have a broad array of problems — prone to seizures, distorted body, hearts or livers that are likely to fail. But sometimes, he said, parents only hear them say mental disability.

Caplan, who spoke generally and wasn't commenting specifically on the Rivera case, said he didn't think mental impairment should be a factor in determining whether a patient is a good transplant candidate unless it's an "enormously severe impairment" that results in a permanently unconscious or minimally conscious person.

"Outside of severe mental impairment, I don't think it should count," he said.

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