UPDATE, 4:50 p.m.: CHOP’s press office just responded to my request for comment with the following:
“The Children’s Hospital of Philadelphia does 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 intellectual disabilities. We at CHOP are deeply committed to providing the best possible medical care to all children, including those with any form of disability.”
According to CBS Philly, Chrissy Rivera says CHOP has contacted her about discussing her daughter’s case further.
Last Thursday, Chrissy Rivera vented to the Internet. She recounted the story of what happened to her at the Children’s Hospital of Philadelphia on January 10th, when a doctor in the nephrology department sat down with Rivera and her husband, Joe, to go over the logistics for an upcoming kidney transplant their daughter, Amelia, was due to undergo.
Amelia was born with a condition called Wolf-Hirschhorn syndrome (WHS), a diagnosis in which a person is missing part of a chromosome and suffers a variety of birth defects, including developmental retardation. The lifespan for people with WHS is unknown, as some die in infancy and some live into adulthood. The condition occurs in an estimated 1 in 50,000 births; some 35 percent die within the first two years of life.
The Riveras received Amelia’s WHS diagnosis three days after she was born and found out soon after that she’d need a kidney transplant down the road. That was nearly four years ago. Just before Christmas, they learned the inevitable had arrived: It was time to get the transplant on the books.
According to her account of what happened on Thursday, Chrissy and Joe were ushered into a conference room where they met with Amelia’s nephrologist and a social worker. In her own words:
[The doctor] gets about four sentences out (I think it is an introduction) and places two sheets of paper on the table. I can’t take my eyes off the paper. I am afraid to look over at Joe because I suddenly know where the conversation is headed. In the middle of both papers, he highlighted in pink two phrases. Paper number one has the words, “Mentally Retarded” in cotton candy pink right under Hepatitis C. Paper number two has the phrase, “Brain Damage” in the same pink right under HIV.
… I put my hand up. “Stop talking for a minute. Did you just say that Amelia shouldn’t have the transplant done because she is mentally retarded. I am confused. Did you really just say that?”
The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.
I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”
The story goes down hill for the Riveras from there, with the doctor, according to Chrissy, saying that Amelia’s quality of life renders her ineligible. It boils down to this: Chrissy says the doctors won’t perform the needed procedure because her daughter is mentally retarded. The doctors on the transplant team, she says, won’t change their minds.
Since publishing her account on the blog Wolfhirschhorn.org, where she blogs regularly, her post has received 399 comments (and counting). A Facebook page and a Change.org petition were started on Amelia’s behalf; so far, the petition has over 14,000 signatures. And people have turned to the Children’s Hospital of Philadelphia’s own Facebook page, where they’ve been leaving comments, like this:
Last night, CHOP posted the following response to its Facebook followers:
I reached out to the hospital for further comment this morning, but haven’t heard back either way yet; I’ll be sure to update this post once I do. As of this writing, CHOP’s Facebook post has 147 comments, some in support of the Riveras and some in support of CHOP.
For what it’s worth, a 2006 study from Ohio State University found that “the one-year survival rate for people with mental retardation who received kidney transplants was 100 percent, and the three-year survivor rate was 90 percent”—on par with post-op statistics for the general population. The study looked at 42 cases of kidney transplants in mentally retarded patients.
What do you think? Should a person’s disability—or quality of life, or prognosis—come into play when deciding whether or not they qualify for a procedure or treatment? Does it make a difference if the patient is a child? Tell us your thoughts in the comments.