Tuesday, January 17, 2012

After Children's Hospital of Philadelphia denies it, 'Team Amelia' backs kidney transplant for child with intellectual disability

From USA Today:

When Chrissy and Joe Rivera walked into a conference room at Children's Hospital of Philadelphia (CHOP) a few days ago, they thought they were going to see a slide show to help them start preparing their 3-year-old daughter Amelia for a kidney transplant.

Instead, a doctor and social worker told the Riveras that Amelia (pictured), who has a rare genetic disorder called Wolf-Hirschhorn syndrome, would not qualify for a transplant because she is "mentally retarded" and has "brain damage," Chrissy Rivera claimed in a blog post Thursday and in phone interviews.

The encounter shocked the New Jersey couple, but so did what happened next: The heavily connected online world of special needs parents kicked into high gear — and put one of the nation's top children's hospitals in a very hot seat. As of late Monday:

•More than 16,000 signatures have been added to an online petition at change.org demanding the hospital allow the transplant.

•Hundreds of complaints — along with some supportive comments for hospital staff — have been left at the CHOP Facebook page.

•More than two dozen bloggers, many of them parents of other children with disabilities, have put up posts supporting the Riveras and criticizing the hospital.

•Tweets using the hashtag #teamamelia continue to spread the story.

"That's the special needs community," says Sunday Stilwell, a Maryland blogger and mother of two boys with autism. She doesn't know the Riveras but started the change.org petition after reading the initial post and thinking "that could be my child," she says.

All the attention appears to have had an impact: Chrissy Rivera said Monday that she and her husband have been invited back to the hospital to discuss a transplant.

Hospital officials also have posted three responses on Facebook. The first, posted Friday, said, in part: "Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities. … We make all decisions regarding eligibility using a non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country."

The second, put up Monday morning, said: "We hear you. We feel and understand your frustration, but we are unable to comment publicly on individual cases."

In an e-mail, hospital spokeswoman Dana Mortensen did say: "The term 'mental retardation' is not used in any information regarding appropriateness for transplantation. The term 'progressive irreversible brain damage' has been used, and we are currently reevaluating this language given the potential for misunderstanding of our intent."

That appears contrary to one part of Chrissy Rivera's story: She said in her blog post that the doctor who spoke with the family had two pieces of paper, with the words "mentally retarded" and "brain damage" highlighted in "cotton candy pink." Over the phone, Rivera said she and her husband were not allowed to take those papers, but she stood by her story.

The case recalls that of Sandra Jensen, a woman with Down syndrome who fought for, and got, a heart and lung transplant in the mid-1990s. Back then, many transplant centers flatly said people with intellectual disabilities could not handle the self-care regimens required of recipients. Jensen later died of complications, but her case spurred calls for hospitals to consider disabled candidates on a person-by-person basis.

A review published in 2006 found many people with intellectual disabilities fared well after kidney transplants. But 43% of child transplant programs surveyed for a study published in 2008 "always" or "usually" considered developmental delay in transplant decisions. One overriding concern: the scarcity of donated organs and the desire to choose candidates most likely to survive and thrive.

But Chrissy Rivera says the doctor at CHOP said he would not recommend the transplant even if a family member provided the organ, citing Amelia's "quality of life." And the social worker wondered who would give Amelia needed medications 30 years from now, Rivera says.

Donation from a family member or another living volunteer is the option now back on the table, Rivera says — and the only one the family expected to pursue. Citing privacy concerns, hospital officials declined to comment on plans for a new meeting.

The conference-room story Rivera shared is "potentially very disturbing," but probably not uncommon, says David Magnus, director of the Stanford Center for Biomedical Ethics. Without knowing the child's full medical history, it is impossible to know if she's an appropriate transplant candidate, he says.

But "it would be wrong for developmental delay to be the sole basis, morally wrong," and also illegal under the Americans With Disabilities Act, Magnus says. Magnus says he knows of at least one child with Amelia's disorder who had a kidney transplant at Stanford's Packard's Children's Hospital. He does not know how she fared. He points out that kidneys do not last forever in any recipient.

Chrissy Rivera, a 36-year-old high school English teacher, says she hopes Amelia will continue to receive care at CHOP, where she's been a patient since infancy. "We've had many positive experiences at CHOP," she says. "This was one doctor and one social worker."

But she says she and her husband, a real estate agent, understand Amelia could die in six months to a year if she does not get a transplant. Right now, Amelia, who also goes by "Mia," does not talk or walk, but does smile, play, roll around on the floor, interact with people and "love her two brothers to pieces," Chrissy Rivera says. "She's a magnet when people meet her."

The support from so many people who have never met her, she says, "is awesome."