Horror! Mentally Disabled Girl Refused Transplant

You must read this story from a mother of a mentally disabled girl whose child has been refused a kidney transplant because she's mentally disabled. I am horrified and unsurprised:
I am going to try and tell you what happened to us on January 10, 2012, in the conference room in the Nephrology department at Children’s Hospital of Philadelphia.

We arrived for our regular Nephrology visit with Amelia’s doctor who has seen her for the last three years. She examines Amelia and sends us for labs. I ask about the transplant and she says we have about six months to a year until she needs one. She tells us she reserved the conference room and when we get back from labs, we can meet with the transplant team and he can tell us about the transplant process.

After the labs, Amelia falls asleep in her stroller and we are called back to a large room with a screen and about sixteen chairs. Joe and I get comfortable and leave a space between us to fit the stroller. After about five minutes, a doctor and a social worker enter the room. They sit across from us but also leave a space between the two of them.

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.

He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.

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?”
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  1. Kidney transplant, not liver...

  2. Welcome to socialized medicine & health care rationing, Obama-care style. This kind of thing has tragically been going on for some time. Hospital "ethics committees" decide on the worthiness (or not) of patients to receive life-saving or life-enhancing treatments based on their flawed utilitarian values system. Goodbye Hippocratic Oath...

  3. I would like to hear both sides of the story before condemning the hospital. The syndrome the little girl has includes an immune deficiency component. While I don't doubt the mother's grief, I wonder if there was a communication breakdown (of which she may be solely guilty) when the hospital was making it clear that the little girl's disorder, which also caused her mental retardation, also is causing her immune deficiency, which would be a very real impediment for a kidney transplant.

  4. They've been invited back...


  5. I'm with Laura - I'd like to hear both sides of the story too. Unfortunately HIPAA regulations prevent the hospital from making ANY case-specific statements, meaning it can't defend itself.

    While I am absolutely against treating the disabled as anything less than fully human and fully deserving, something about this story feels off to me. The mother is an evocative writer, but her account is clearly fictionalized somewhat (there's no way she remembers every word that was spoken, like that) and I wonder how much of the story is actually true. As Laura said above, there may be medical concerns that have nothing to do with the little girl's mental condition. The hospital has made a statement that they "have never declined a patient for transplant based solely on their cognitive status" and also, I believe, has invited the family back for another consultation.

  6. But her description of the two pieces of paper, with the COGNITIVE issues specifically highlighted, suggests that was the rationale being given to her for denying the transplant, doesn't it?

  7. If the decision not to carry out the transplant was made solely because Amelia was intellectually retarded, then it was not a medical decision (as to what was best for the patient's survival and health) but a philosophical one (made on the basis of whether they evaluated her life to be worthy (or as worthy as others') of living. If this was the case, the physician was clearly not making a decision within his competence, as a physician. Moreover, such a decision (that he was not competent to make) was highly immoral, and clearly not in the best interests of this girl, who has the same right to live and to receive life-saving treatment, as anyone else. The family ought to go to the highest court to vindicate that right.

  8. Sadly this is common theme I hear while working with parents of special needs children. I have experienced it myself in a Catholic hospital. My daughter who has Down syndrome was ill with double pneumonia and the nurses fought my efforts to keep the oxygen for her. Read more here;http://causa-nostrae-laetitiae.blogspot.com/2012/01/baby-amelias-case-it-not-only-one-bella.html

  9. Good for those doctors. Think about this. Why would they invest millions of dollars in someone that will never be able to contribute to society, when there are candidates out there with family's, careers, etc that will be able to actually take their medication and repay society.


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