It's upsetting enough for parents to have to consider transplant procedures for their toddler. But a meeting with a transplant team at the Children's Hospital of Philadelphia (CHOP) quickly became controversial for one couple over two words cited as the reason the couple's child was being denied a transplant: mentally retarded.
Last week, Chrissy Rivera, her husband Joe and their 3-year-old daughter, Amelia, attended a meeting at CHOP, where Amelia's primary physicians have been since her infancy. This meeting was, however, to discuss a kidney transplant Amelia would need within six months to a year. The catch, at least for some doctors, is that Amelia has Wolf-Hirschhorn syndrome.
Rivera explains in a blog post that her daughter, whose condition includes symptom's like slow development, seizures and mental retardation, was told she was not be eligible for the kidney transplant she would need because of "brain damage" and "quality of life." Here's some of Rivera's account:
The doctor begins to talk and I listen intently on what he is saying. He has a Peruvian accent and is small, with brown hair, a mustache and is about sixty five years old. He 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 remind myself to focus and look back at the doctor. I am still smiling.
It wasn't long before Rivera was no longer smiling. Breaking out of what she describes as a hazy fog "like swimming under water", Rivera said “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?”
As the doctor confirms what he was saying, Rivera told him that a family member planed on donating but was told this was not a solution either:
“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.
Since this account was posted on the Wolf-Hirschhorn.org blog, which serves as an information network about the disorder as well as a support line for parents, on Jan. 12, support for Amelia has flooded the Internet. USA Today reports that more than 16,000 signatures advocating for Amelia have been posted on change.org; CHOP's Facebook page has been inundated with complaints; #teamamelia has spread the story on Twitter; and dozens of blogs have voiced support for the family.
All of this, USA Today reports, appears to be working as Rivera told them Monday that the hospital invited the family back for another meeting. USA Today reports Rivera as saying the family would like to continue care at CHOP, as its where Amelia's other treatment has been.
According to USA Today, the hospital has responded to the blog post with two Facebook posts and an email:
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."
USA Today reports David Magnus, director of the Stanford Center for Biomedical Ethics, as saying it would be illegal for the hospital to deny a transplant solely on mental development based on the Americans With Disabilities Act. USA Today also points to a 2006 study that showed those with mental disabilities doing well after kidney transplants and also a 2008 study that said 43 percent of transplant programs do consider developmental delay as a factor in transplant decisions.
But, Lisa Belkin, a former New York Times medical reporter, writes on the Huffington Post that she doesn't think Amelia should be eligible for the transplant. Here's part of her argument why:
Kidneys, all human organs, are among the rarest and most precious of the world's resources. The National Kidney Foundation tells us that 104,748 people are currently waiting for a transplant of some kind right now and 4000 names are added to that list each month. Today -- every single day -- 18 people will die while waiting. Each of those patients is someone's child.
Which is why there are rules -- unemotional, clinical, detached rules -- for a situation that is none of those things. And it is why there are forms like the ones placed in front of Amelia's parents. Amelia is not being denied a donor transplant because she is, as her mother writes, "mentally retarded." She is being denied a donor transplant because she has a cascading syndrome that will shorten and limit her life, meaning that kidney will not "save" her in the way that it might someone who starts out healthier. In cold clinical terms this means that everything it takes to undergo a transplant -- the medications, the repeated biopsy procedures afterwards, the constant monitoring and machinery -- are difficult and sometimes impossible compared with a child who is less impaired. The less mobile a patient is, the far greater the likelihood that she will develop an infection, or pneumonia, or a host of other complications that make it probable that the transplant will eventually fail. Which, in those same cold clinical terms, would make it a waste of an organ.
Belkin writes that its a reality that "brings her to tears", but even Dr. Kurt Hirschhorn, whom she contacted, said he doesn't think Amelia should be eligible for a transplant. Belkin does note that this viewpoint is based on kidney donation from a stranger; she writes that in the event a family member were to donate the kidney voluntarily that Amelia should be eligible. Hirschhorn even said he doesn't understand why the hospital would deny that.
Susan Senator, a mother of two autistic boys, writes a counterpoint in the Huffington Post, stating that there are harsh realities, "limited resources" and "bad laws," but that we shouldn't continue accepting them with bad decisions. Senator writes that in addition to looking at the reason for kidney shortages we need to review "our current way of looking at disability."