Child with intellectual disabilities denied transplant at CHOP - page 11

by mercyteapot 14,818 Views | 163 Comments

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... Read More


  1. 0
    Quote from mercyteapot
    CHOP reversed course last night and said the transplant could be done with a designated donor.
    Source?

    The family has been invited back for another meeting, but there don't appear to be any reports that they've reversed their decision.
  2. 5
    To me it makes sense to triage organs to patients with the most likelyhood of surviving the surgery and providing a stable environment for the organ. This is already considered in the selection process. People with mental illness who cannot maintain the supportive medicine regimen may be excluded. People who's addictive behavior contributed to the organ disfunction are expected to stop that behavior. This is not a matter of valuing the addict's life less. It's just trying to place the organ where it will be supported so that it can do the most good for the longest possible time.

    CHOP has responded the most it can without violating HIPAA. 'Team Amelia' rallies for special needs child - USATODAY.com

    "One overriding concern: the scarcity of donated organs and the desire to choose candidates most likely to survive and thrive."
    leslie :-D, VivaLasViejas, Esme12, and 2 others like this.
  3. 1
    Quote from MunoRN
    Source?
    Lisa Belkin said on Huffington Post that Chrissy Rivera told her CHOP said the transplant could be approved there. Of course, Amelia will have to met the medical qualifications, which I've said several times throughout the thread. The statement that the transplant can be approved is the reversal. I haven't read that there will be another meeting, but then again, I'm sure there will be many more before this is settled.

    Lisa Belkin: Denying A Transplant To A 'Retarded' Child?
    leslie :-D likes this.
  4. 0
    Quote from azhiker96
    T
    'Team Amelia' rallies for special needs child - USATODAY.com

    "One overriding concern: the scarcity of donated organs and the desire to choose candidates most likely to survive and thrive."
    From the article:

    Right now, Amelia, who also goes by "Mia," does not talk or walk, but does smile, play, roll around on the floor, interact with people and "love her two brothers to pieces," Chrissy Rivera says. "She's a magnet when people meet her."
  5. 10
    I really don't think there's sufficient basis to accuse CHOPS of refusing to perform a transplant based solely on MR. Considering this is a group of people who spend every day caring for very sick children, for many of these children the best that can be hoped for is that they die peacefully, I think they deserve a larger burden of proof than this before we join in accusing them of being bad people. In my mind there's a special place in heaven for these caregivers.

    It's not uncommon for someone's brain to filter bad news in a way that makes it less traumatic or to create more hope than actually exists. I've seen many family members of dying patients told very succinctly what the situation is, yet when they repeat what their understanding of the situation, it is almost always much, much different that what they were told. At that's what happens when to tell the family of a 90 year old with previously diagnosed mets that this may be their time, I can only imagine how the brain of a young child's mother would interpret this sort of information.

    It would seem unlikely that CHOPS would deny a transplant based solely on MR, particularly since they've transplanted many MR patients in the past. What's important to keep in mind about this case is that Amelia does not simply have MR. She has Wolf-Hirschhorn syndrome which often includes MR as just one of the many effects. We don't know exactly what other effects or to what degree Amelia has been affected, but the fact that she is unable to even crawl suggests there is more than just simple MR here. Other effects frequently found in WHS include autoimmune and seizure disorders. Both of these may mean that a kidney transplant could significantly worsen Amelia's quality of life due to both the transplant and the drug regimen required post-transplant.

    I think this is where the accusation that CHOPS doesn't value her life goes off the track. I often advocate for allowing someone to die, not because I don't value their life, but because I do. Valuing a persons life can be practiced by both attempting to extend their longevity, but also by avoiding unnecessary and excessive suffering that result from our actions.
    Ayvah, morte, Hoozdo, and 7 others like this.
  6. 0
    I was thinking about this case as I caught up and tbh, depending on the age of the child and the severity of the MR, I could see it as a reason to refuse a transport IN CERTAIN CASES.

    People with mental disabilities in general do NOT understand what happens when they have surgery - they can't understand, in Amelia's case, WHY they had the surgery. They just know that it hurts. That they have to have all this medicine. What if it rejects? She won't understand the WHY. Informed consent is one of the most vital pieces of good medicine. So what if someone else agrees for them? They don't have the capacity to understand the whys, all they know is that they hurt. The person who decides is not the one that feels the pain.

    I dunno. Congrats for Amelia, but there's no guarantee there will even be a donor found, or that the recovery or the surgery will go smoothly. I still worry.
  7. 6
    Muno, you just said so many things that are so true and in such a nicer way than I generally say them.

    Who's to judge "quality of life"??
    There's definitely not a hard line in the sand. But I've seen so many kids (adults too, but it's even more heartbreaking to me for the kids, as they never had a chance to tell someone what they would want) that are so far over any line that could possibly be drawn, and we're only keeping alive for the parents. We're poking and prodding and cutting open and sewing them closed. And they don't know where they are or what's going on. At least I pray that they don't know where they are or what's going on. Because if they do, they are cursing us all.

    I don't know Amelia. Or her mom. But I do know that diagnosis includes more than just "mental retardation." There are serious physical (as if the brain isn't physical) effects of the syndrome as well. And it's irresponsible to hear one side of the story, one VERY biased side of the story, and place judgment upon an entire hospital of people that more than likely are truly trying to do what is right. We just know that mom didn't hear what she wanted to hear. That is VERY different from knowing that the other side has bad communication skills, or they just want to smother little Amelia with a pillow right now but they'll settle for denying her a kidney.

    We are jumping to conclusions with almost NO facts. Really the ONLY fact we do know, is there's a blog that exists.
    Ayvah, Hoozdo, OCNRN63, and 3 others like this.
  8. 10
    There's a lot of things I have done that were completely horrifying; I've coded people who didn't want to be coded because a chicken you-know-what doc didn't have the huevos rancheros to do what the patient wanted instead of what the family wanted. I've seen them put PEG tubes in people who were over 100 years old and with end stage dementia, contracted into a fetal ball, all while the family is telling me what "Me-maw" wants when the CT of her head showed more air than brain, and I've had to struggle to keep that poor woman from drowning in Nephro. I've seen a family full of leeches fighting for who gets the house and who gets the car as the patient quietly dies, the last thing they hear on earth being their family picking over their bones.

    But the one thing, the one thing I haven't had to do is decide who gets a heart, who gets a kidney, and who doesn't. I cannot imagine being in the position where there's this one kidney; now, who does it go to? The child with a chronic condition who will never be able to take even the most remedial care of herself? Follow complicated medication regimes? Be self aware enough to report the beginning signs of rejection? Can she even take the anti-rejection meds with the current meds she's on?

    There are people who make those choices every day. I've seen the transplant teams come in for a harvest, knowing that they left with the life of one person in their hands and the death of another who wouldn't live for another chance on the transplant roulette wheel. Those are the cold equations of transplant. God bless them.

    I plan to be an organ donor -- they can have it all, down to my earrings. But I want my heart, my lungs, my kidneys to go to people who have a running shot of taking care of my gift, not someone who received it because they had power, money, or could pull the heart strings. Give my organs their best possible shot at a normal life span, even if I couldn't have one. And with this child, I don't think that would be the case.
    Ayvah, Hoozdo, LaughingRN, and 7 others like this.
  9. 4
    Quote from nohika
    I was thinking about this case as I caught up and tbh, depending on the age of the child and the severity of the MR, I could see it as a reason to refuse a transport IN CERTAIN CASES.

    People with mental disabilities in general do NOT understand what happens when they have surgery - they can't understand, in Amelia's case, WHY they had the surgery. They just know that it hurts. That they have to have all this medicine. What if it rejects? She won't understand the WHY. Informed consent is one of the most vital pieces of good medicine. So what if someone else agrees for them? They don't have the capacity to understand the whys, all they know is that they hurt. The person who decides is not the one that feels the pain.

    I dunno. Congrats for Amelia, but there's no guarantee there will even be a donor found, or that the recovery or the surgery will go smoothly. I still worry.
    Infants and toddlers do not understand what happens when they have surgery either. Plenty of school-aged children will throw temper tantrums if they find out they are going to the hospital. I have seen teenagers say "I'm not having surgery" because they didn't want to miss school or have their head shaved. While an 18 year old can certainly refuse surgery on these grounds, a 15 year old cannot.

    The child in question is 3 years old. Show me a 3 year old who does understand why she is having surgery and the risks/benefits. It sounds like you are basically saying that we shouldn't do surgery on anyone who doesn't understand these things. So should we let the infant with hypoplastic left heart syndrome die because he doesn't understand what will happen to him for the rest of his life if we operate on him? Of course informed consent is a vital piece of good medicine but children (regardless of ability/disability) do not have the legal standing to consent to any medical procedure. "The person who decides is not the one that feels the pain" is true of all pediatric surgeries, not just transplant and of many transplants done on children without cognitive disabilities. No 3 year old (even the developmentally and cognitively on-target) ones can understand the complexity of a transplant and the post-transplant regimen.
    lrobinson5, imintrouble, mercyteapot, and 1 other like this.
  10. 10
    Quote from nerdtonurse?
    there's a lot of things i have done that were completely horrifying; i've coded people who didn't want to be coded because a chicken you-know-what doc didn't have the huevos rancheros to do what the patient wanted instead of what the family wanted. i've seen them put peg tubes in people who were over 100 years old and with end stage dementia, contracted into a fetal ball, all while the family is telling me what "me-maw" wants when the ct of her head showed more air than brain, and i've had to struggle to keep that poor woman from drowning in nephro. i've seen a family full of leeches fighting for who gets the house and who gets the car as the patient quietly dies, the last thing they hear on earth being their family picking over their bones.

    but the one thing, the one thing i haven't had to do is decide who gets a heart, who gets a kidney, and who doesn't. i cannot imagine being in the position where there's this one kidney; now, who does it go to? the child with a chronic condition who will never be able to take even the most remedial care of herself? follow complicated medication regimes? be self aware enough to report the beginning signs of rejection? can she even take the anti-rejection meds with the current meds she's on?

    there are people who make those choices every day. i've seen the transplant teams come in for a harvest, knowing that they left with the life of one person in their hands and the death of another who wouldn't live for another chance on the transplant roulette wheel. those are the cold equations of transplant. god bless them.

    i plan to be an organ donor -- they can have it all, down to my earrings. but i want my heart, my lungs, my kidneys to go to people who have a running shot of taking care of my gift, not someone who received it because they had power, money, or could pull the heart strings. give my organs their best possible shot at a normal life span, even if i couldn't have one. and with this child, i don't think that would be the case.
    i've coded the people who didn't want to be coded because someone else decided to do what they wanted instead of what the patient wanted. i took care of a 112 year old lady, contracted into a fetal ball and screaming constantly because her 96 year old daughter insisted on a pacemaker because she wasn't ready for mamma to die. i've watched patients die as their family argued about the disposition of the assets and i've worked desparately to keep someone alive until after the social security check could be cashed. and i've seen the decisions that the transplant teams have made . . . some i've agreed with and some i have vehemently disagreed with.

    i plan to be an organ donor as does my husband. but like you, i want my organs to go to people who have a running shot of taking care of my gift, not someone who received it because they were vips, had power or money or took their troubles to the media because they've never believed the word "no" should apply to them. i'd want my organs to go to someone who had a chance at a normal life span and a normal life . . . a productive life. and like you, i don't think it would be the choice with this child.
    Ayvah, Hoozdo, LaughingRN, and 7 others like this.


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