Child with intellectual disabilities denied transplant at CHOP

  1. 2 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.
    http://www.wolfhirschhorn.org/2012/0...a/brick-walls/
  2. Visit  mercyteapot profile page

    About mercyteapot

    mercyteapot has '20+' year(s) of experience and specializes in 'Dev. Disabilities, Health Disparities'. From 'San Diego, CA, US'; Joined Sep '03; Posts: 12,728; Likes: 1,798.

    163 Comments so far...

  3. Visit  Asystole RN profile page
    18
    Somehow I think there is more to this story than what is being posted by the parents. Just a thought but I think many of us have stories of how patients and their families interpret what we say. All too often we are portrayed as evil demons…

    as if they magically justify playing God with this child's life
    How do you know that God is not calling poor Amelia to join him? If God really wanted her to have a kidney he would miracle one into her or heal her kidneys. :shrug:

    The fact is there are about a handful of organs and about a bazillion deserving people out there. You have no idea how difficult it is for someone to triage and decide who exactly lives and dies. The fact is we MUST triage due to circumstances outside our control. So Amelia doesn’t get a kidney, BOO FREAKIN HOO! Are you going to be the one that has to tell the parents of Billy, Sarah, Susy, or Jessy that their kid gets to die so Amelia gets to live a couple more years?

    The fact is we must give our very limited resources to those who will benefit the most from them. It is sad that Amelia was dealt such a bad deal but the fact is she will not have a very good outcome no matter how many organs we stuff into her. Do you have any idea how much pain and suffering she will endure with a transplant? What the immunosuppressant drugs will do to her?

    We should make her life as comfortable and trouble free as we can and allow nature/God to work their plan.
    Ayvah, GHGoonette, elkpark, and 15 others like this.
  4. Visit  Spidey's mom profile page
    2
    In the link it says that Amelia would not be put on the list waiting for transplant. Her parents want to have themselves and other family members tested instead.

    So, she wouldn't be taking a kidney from Billy Perfect or Sarah Sue Better Than You, etc.

    I like the comments after the blog post - the majority of them give helpful advice.

    Thanks for posting this Mercy.
    GHGoonette and DeLana_RN like this.
  5. Visit  Multicollinearity profile page
    4
    I'm not sure what the answer is. I read the comments at the end regarding "how dare the MD play God?!" Well, that's precisely what physicians and ethics committees do when they must allocate scarce organs.

    Is the issue that she will not be able to adhere to the regiment of anti-rejection treatment on her own? Or is it that she has a shorter life expectancy due to her pre-existing condition?

    Is it both? I don't know.
    herring_RN, Not_A_Hat_Person, llg, and 1 other like this.
  6. Visit  Spidey's mom profile page
    0
    It is definitely a tough call Multicollinearity.

    Working as a nurse, we certainly come across many issues that end up with an ethic's committee.

    Again - this is a good issue to contemplate and discuss.
  7. Visit  Multicollinearity profile page
    2
    And is the answer that a civilized society has a responsibility to provide and allocate care so she can maintain her regimen after her parents have passed away? Thing is - organ transplants do not go to the uninsured because that's how a fair and just society should operate. They go to the insured or those with the funds.

    Again, I don't know what the answer is.
    Spidey's mom and vanburbian like this.
  8. Visit  Asystole RN profile page
    10
    Quote from Multicollinearity
    I'm not sure what the answer is. I read the comments at the end regarding "how dare the MD play God?!" Well, that's precisely what physicians and ethics committees do when they must allocate scarce organs.

    Is the issue that she will not be able to adhere to the regiment of anti-rejection treatment on her own? Or is it that she has a shorter life expectancy due to her pre-existing condition?

    Is it both? I don't know.
    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?
    LaughingRN, azhiker96, VickyRN, and 7 others like this.
  9. Visit  Multicollinearity profile page
    1
    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
    Sehille4774 likes this.
  10. Visit  vanburbian profile page
    5
    Quote from Multicollinearity
    And is the answer that a civilized society has a responsibility to provide and allocate care so she can maintain her regimen after her parents have passed away? Thing is - organ transplants do not go to the uninsured because that's how a fair and just society should operate. They go to the insured or those with the funds.

    Again, I don't know what the answer is.
    I have to wonder what insurance plan these parents have for this child. She qualifies for Medicaid.

    So, in essence, our tax dollars are paying for this. Is this the best way to spend our limited, (and becoming even more so) health care dollars?

    As with any medical intervention- we should think long and hard about answering all of the questions- even the unpleasant ones.

    Just because we "can" do something, does this mean we "should"??
    nerdtonurse?, azhiker96, llg, and 2 others like this.
  11. Visit  mercyteapot profile page
    0
    They're not asking for a donated organ; they or someone from their large, supportive, family will donate. The problem with suggesting that we make her comfortable and wait for God's plan is that by following this logic, that should be the treatment for anyone who needs a transplant of any type. No, I don't know how she'll suffer from the transplant. Only a transplant recipient could speak to that.
  12. Visit  Multicollinearity profile page
    6
    For parents of children with developmental disorders and developmentally disabled adults this tells them they are worth less than your average person. It's a very slippery slope.
  13. Visit  mercyteapot profile page
    1
    Well, I don't see the ethics committees as playing God as long as they're playing fair. I think, in fact, they're put in to place to try to assure that these tough decisions are made in the most equitable way possible. if, in fact, there are medical conditions that disqualify this child from receiving a transplant, then the parents should have been informed of those reasons. At the very least, this doctor's approach lacked compassion and any real empathy for their parents. There may well be more to this story. I don't mean to say that the Mom isn't providing a truthful account of the appointment as she experienced it; just the old adage about there being 3 sides to the story- his, hers, and that of the objective observer. I am distressed, though, at any suggestion that paying for this transplant, assuming that there are no medical reasons to disqualify little Amelia from receiving one, shouldn't be paid for by Medicaid. At least the doctor didn't offer that up as a reason for his recommendation that the transplant be denied. ADA lawsuit, anyone?
    Sehille4774 likes this.
  14. Visit  mercyteapot profile page
    2
    Quote from Multicollinearity
    For parents of children with developmental disorders and developmentally disabled adults this tells them they are worth less than your average person. It's a very slippery slope.
    Very slippery indeed... because who gets to decide who qualifies as average? Is an IQ of 100 going to be necessary? Or will you have to be as smart as the doctors making the decision? What if you're really smart, but have made some very boneheaded decisions in your day? Have you squandered your intelligence, so too bad, so sad?
    Spidey's mom and Sehille4774 like this.


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