The child has Wolf-Hirschhorn Syndrome and will need a kidney transplant in about a year. On Tuesday, her parents were informed by a member of the transplant team that he will recommend against the transplant because their daughter is "mentally retarded" and "brain damaged" (terms he chose to write in big letters for them to see, as if they magically justify playing God with this child's life). According to the parents, he actually told them that their daughter's quality of life wasn't worth preserving. I hope to God this story isn't true; that the parents somehow misunderstood, but nothing I've heard or read so far supports that hope. It is hard to believe that in 2012 a world class hospital has a physician with such a powerful position that thinks this way, or that the social worker would be supportive of his decision. This is the mother's account. There are other news accounts of the incident available; I chose to post this because it is so powerful, though.
Jan 14, '12
Quote from Asystole RN
Well those with Wolf-Hirschhorn Syndrome (WHS) do not tend to fare well and ha a rather high mortality rate. Many do not make it to term, let alone out of infancy. Not to mention that the patient has HIV and HCV. Pretty much no matter what they do this patient will not have a good outcome due to the extremely complex nature of her conditions. The HIV and HCV alone would not make her a great candidate for organ transplant, let alone the WHS.
Immunosuppressant drugs are not pleasant, not to mention the pain from the procedure.
This brings us to the topic of quality-of-life, just because we can, should we?
At first reading I couldn't tell if she has HIV and hep C or if those were diseases on the form-type paperwork the mother was viewing. I think the mother was referring to seeing other (more catastrophic to her) conditions on the paperwork - some sort of systems list of pre-existing conditions. Probably a list of conditions by system the physicians use. For her daughter, "mentally retarded" and "brain damage" were the conditions high-lighted.
Last edit by Multicollinearity on Jan 14, '12