Three-year-old Amelia Rivera. (Rivera Family Photo)

The story of New Jersey’s Amelia Rivera, a three-year-old girl who needs a kidney transplant, has now spread across the world. Amelia’s mother, Chrissy Rivera, first wrote about her daughter’s story in a blog post, which we shared with you here on Strollerderby.  Mrs. Rivera said in her blog post, and has said on camera for CBS News, that the Children’s Hospital of Philadelphia denied Amelia a kidney transplant solely because she is intellectually disabled.

Amelia has Wolf-Hirschhorn Syndrome, a rare genetic disease that affects children’s cognitive abilities, causes distinct facial features, and can lead to organ failure.

As Amelia’s story has gone viral, it’s clear that some of the facts of her story, and her disease, are not well understood. Most importantly, the Children’s Hospital of Philadelphia (CHOP) is prevented from discussing her case due to privacy law. CHOP has released several statements via its Facebook page, the most recent being:

While we remain unable to comment on individual CHOP patients or cases due to laws that protect patient privacy, we wish to state again that we do not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and mental disabilities.

Here’s the latest on Amelia’s story:

Support Continues to Grow

The change.org petition asking CHOP to reconsider, and give Amelia the kidney transplant, is still going strong at 32,900 signatures and counting.

Tim Shriver, CEO of Special Olympics, tweeted his support.

Timothy Shriver, CEO of Special Olympics, has publicly supported Amelia’s cause on Twitter and in a heartfelt blog post on the Special Olympics website.

Philadelphia Archbishop Charles Chaput, leader of Philadelphia’s Catholic community, also offered support, expressing his concern that “the habit of treating genetically disabled children as somehow less worthy of life is growing across the country.”

New Jersey Senate President Steve Sweeney has said he plans to introduce a bill making it illegal for a New Jersey hospital to deny life-saving health care based solely on a person’s disability. Sen. Sweeney, who has a daughter with Down Syndrome, said:

“People with developmental disabilities should not be treated as second-class citizens,” he said.”Their disabilities do not make them any less human or worthy of respect and common decency. I will immediately be putting forward legislation that would prevent this kind of treatment from ever happening to someone who seeks care at a hospital in New Jersey.”

The Children’s Hospital of Philadelphia, while based in Pennsylvania, has primary care and specialty care offices in several New Jersey locations. It also has affiliations with hospitals in Princeton and Somers Point, NJ.  In a statement, CHOP said it has yet to review the proposed bill.

“Senator Sweeney has been a longtime friend to CHOP and shares our interest in providing children with access to the best medical care available,” according to a hospital statement. “Although we have not had an opportunity to review the proposed legislation, we agree with Senator Sweeney that the issue of non-discrimination is an important one and we look forward to working with him on this important matter.”

If she does have a transplant, where would Amelia’s new kidney come from?

In both opinion pieces and in Internet comments, many people have expressed concern about whether Amelia’s potentially shorter lifespan mean she should not be listed on the national kidney donor registration list. According to Ms. Rivera’s original blog post and subsequent interviews, the Rivera family has never asked for Amelia to be put on the donor list. They have only asked for family members to be tested to see if there is a match.

While adult-sized kidneys don’t naturally fit into a child’s body, recent medical advances have pioneered successful methods of transplanting adult kidneys into children.

Are there any real reasons to deny a cognitively impaired person a  transplant?

Not just because the person is cognitively impaired.  A 2006 study from Ohio State University on kidney transplants for patients with mental disabilities found that the success rates were as good, or better, than those for patients without mental disabilities.

“The studies reported good compliance with post-transplant medications due to consistent support from family members or caregivers,” the paper noted.

However, there can be legitimate reasons to deny a person a transplant.  Mary Beth Happ, a professor at the University of Pittsburgh Center for Bioethics and Health Law, told TIME Magazine that the issue of severe mental disability and kidney transplants has been a source of contention for nearly two decades.

“Co-existing health problems such as weakened immune system and/or heart disease, which are prevalent in (Wolf-Hirschhorn syndrome), are an additional risk that transplant centers and parents must consider,” Happ wrote in an email.

Why is this story so one-sided?

CHOP is prevented from discussing individual cases by privacy law.  However, I’ve asked CHOP’s Public Relations personnel twice if they could release a copy of their written protocol for deciding on kidney transplants.  I’ve also requested blank copies of the forms given to parents in these situations. Neither of those things are specific to Amelia’s case, and shouldn’t be restrained by HIPAA.  However, I haven’t gotten responses on that.

To my knowledge, CHOP has not released any additional statements since its Tuesday Facebook post and its response Thursday to Senator Sweeney’s proposed legislation.

What’s next for Amelia?

It has been incorrectly reported by another news outlet that CHOP relented, and has agreed to allow the kidney transplant. That is not the case.

However, according to CBS News, CHOP has asked the Rivera family for a second meeting. Mr. and Mrs. Rivera continue to be optimistic and hope for a happy ending to this story.

“It’s one doctor who’s never seen us who is making this call,” Mr. Rivera told The Associated Press on Wednesday. “We’ve had a great experience with CHOP. We’re not against CHOP, but maybe something needs to be changed. One guy tarnished their reputation.”

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