Over at Love That Max, Ellen Seidman blogs about a child who was denied a kidney transplant solely because she is cognitively impaired — or, in the phrase written in the transplant doctor’s folder, “MENTALLY RETARDED.” As the child’s mother, Chrissy Rivera, writes on her blog:
I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”
I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.
A bit of hope. I sit up and get excited.
“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”
“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.
After Rivera told the story on her blog, and it was picked up on disability blogs and began rocketing around Facebook, the hospital in question (Children’s Hospital of Philadelphia, for those keeping score) (as I am) issued a statement on its own Facebook page saying it “does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status.” Which says EXACTLY NOTHING. Uh, one of your doctors excluded a patient for exactly that reason, and was up-front about it. Are you saying it didn’t happen, or are you saying you issued a statement precipitously because it DID happen and therefore your statement is manifestly untrue, and the doctor made a mistake and you intend to correct it?
The name of the little girl whose family was so rudely treated is Amelia. She goes by Mia. Now, if it turns out there are other counterindications against transplant surgery that are related to the rare genetic disorder she has, Wolf-Hirschhorn Syndrome, well, let’s talk about that. If this child has heart defects or a seizure disorder that make the surgery too risky, that’s worth discussing. But that’s not what the doctor said. And guess what: Mental retardation alone should not be a reason to sentence a child to death. Which is exactly what will happen to Mia if she doesn’t get this surgery.
There’s a petition at change.org urging the hospital to reconsider. And Children’s Hospital of Philadelphia needs to consider its policies, whether they’re actually being followed, and whether anyone on staff needs remedial training in human decency and dealing with families.
UPDATE! February 16:
Children’s Hospital of Philadelphia apologized for the way it communicated with the Riveras. According to the Philadelphia Inquirer, the hospital released a statement with the approval of the Riveras, saying it was reviewing its processes to ensure that it was “sensitive to the needs of all families.” Earlier, they’d responded only by saying that they do not take intellectual ability into account when determining transplant eligibility. Stay tuned.