So, as of Monday, the Children's Hospital of Philadelphia (CHOP) had contacted Amelia Rivera's family to talk about a kidney transplant for the three-year-old girl, according to CBS-Philapelphia. But the donor kidney will not come from the transplant waiting list, (although the Huffington post says that the hospital appears to have changed its original position that it wouldn't perform the transplant surgery.) (http://philadelphia.cbslocal.com/2012/01/16/childrens-hospital-denies-withholding-kidney-transplant-for-disabled-girl/.)
Amelia Rivera has Wolf-Hirschhorn syndrome, a developmental disability that causes intellectual disability and distinct facial features, and that can cause seizures, heart defects, and other serious health concerns.
The controversy stems from mother Chrissy's post on a Wolf-Hirschhorn support blog. She talked about how a doctor at CHOP told her that Amelia would not be considered a candidate for kidney transplant because she was "mentally retarded". When the news hit the Internet, people were outraged, and an online petition was created that now has 24 000 signatures.
The Case Against Putting Amelia Rivera on the Transplant Waiting List
Lisa Bilkin of the Huffington Post wrote a reasoned, unemotional (but not uncaring) column about why Amelia Rivera should not get the kidney. And if she can get me to see her point of view on something like this, she's made her point well. The kidney will most likely only prolong Amelia's life, not save it. The transplant and recovery process will be difficult, and the outcome is uncertain given her other health issues. Given the scarcity of donor organs, especially for children, from the standpoint of the organ donation system, there are simply better candidates. And in this context, the doctor was likely using "mentally retarded" as diagnostic criteria. The most sensitive choice of words, given the situation? No. But likely not meant to be as insensitive as it sounds like it was. http://www.huffingtonpost.com/susan-senator/kidney-transplant_b_1208540.html
All of this is certainly cold comfort to the Rivera family. Which is why I'm glad the Huffington Post also posted the other viewpoint.
The Case for putting Amelia Rivera on the Transplant Waiting List
Susan Senator's take on Amelia Rivera's situation is that it's another manifestation of what she's seen time and time again in the life of her son (who has autism): people with disabilities are still seen as inferior. Despite CHOP's insistence that it doesn't discriminate on the basis of disability, ultimately it's Amelia's disability that *is* determining whether or not she gets put on the waiting list. And perhaps Bilkin is right in that this is "the way it is" right now...but I agree with Senator's assessment that it *should* be different, and that we have a responsibility to work toward leveling the playing field. Because, as Senator says, it shouldn't be up to doctors to decide whether this little girl's life is worth less than someone else's based on her cognitive capacity and speculations on the outcome and/or her potential quality of life after the transplant. Doctors are not always right. People should be given a chance at life regardless of disability. http://www.huffingtonpost.com/susan-senator/kidney-transplant_b_1208540.html
A Confounding Variable
I had signed the petition to get the hospital to put Amelia Rivera on the transplant list before I read either of the Huffington post commentaries. However, Bilkin's commentary brought some information to light that I wasn't aware of, and that I think makes the hospital's claim that this isn't a case of discrimination even more suspicious.
Chrissy Rivera told Bilkin that the family never wanted Amelia put on the transplant list. They wanted to give her a kidney themselves, but were told by the hospital that it wouldn't perform the transplant surgery. Bilkin ran this by pediatrician and geneticist Kurt Hirschhorn, who said that there was no reason for the hospital not to perform the transplant surgery in that circumstance as long as the donor fully understood Amelia's situation.
The hospital had changed its position on performing the surgery on Sunday night when Bilkin called the family. But the outrage about not putting people with disabilities on the transplant list continues to build.
Proper thing. I'm putting the commentaries by Bilkin and Senator out there as a call for change. Please go read them, think about them, and think about what you can do for families in situations like the Rivera's...it could be as simple as signing your name.
And if you'd like to digitally sign the online petition to have Amelia Rivera put on the transplant list, here's the link: http://www.change.org/petitions/director-of-public-relations-allow-the-kidney-transplant-amelia-rivera-needs-to-survive
More about Wolf-Hirschhorn syndrome: http://www.wolfhirschhorn.org/about-wolf-hirschhorn-syndrome/
Update, Jan 21: Sunday Stilwell has notified me via comment that CHOP hasn't actually changed its mind on whether it will perform the transplant surgery. This is very disappointing news.