http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/Has anybody seen this? A little girl who needs a kidney transplant is being denied one because she is mentally disabled. Their reasoning is that she can't have a full quality of life anyway, and because of her disability, she doesn't have the capacity to take care of herself properly and won't be able to take care of herself down the road when her parents are gone and she eventually needs another transplant.
This really makes my skin crawl. What about the oath doctors take to do everything you can to help a patient? Not to mention, isn't this illegal, considering they are discriminating against her based on a disability?
Re: Little girl denied transplant because of mental disability
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06.10.10
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[QUOTE]A contraindication for organ transplant (since organs are rare and precious) is that the recipient should be deemed capable of taking care of him/herself in the best way possible to reduce risk of organ rejection. If a patient is deemed unlikely to be able to adhere to the very rigorous routine of antirejection medications and multiple screening appointments and procedures, that person is not given an organ. It sounds cruel, but again,<strong> there are not many donate-able organs around, and there are a lot of people who need organs desperately. </strong>
Posted by mica178[/QUOTE]
<div>Thanks Mica - I didn't want to say it because it does indeed seem cruel, but there are hundreds if not thousands of people waiting to get an organ and unfortunately, most won't get them. Hospitals/doctors have to go through a lot to decide who will get them. I wouldn't want to be in their shoes.</div><div>
</div><div>Also, stories like these that get plastered on FB tend to annoy me because they are so one sided.</div>
While it does seem terribly unfair, I figured it was something like that.
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And Mica, et al, are correct...there are millions of people who need transplants and so few organs available that cuts are made, and sometimes they seem harsh, but that's how it is. My aunt died because her liver failed and the doctor told my grandparents that they would never approve a liver transplant for a hypochondriac and a pill-popper. It's sad, but that's how it is. Everyone who is rejected for a transplant is someone's mother, father, child, grandparent, aunt, uncle.
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Horribly devastating, and as a family, I'm sure I would be heartbroken, but the facts are the facts.
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My dad was an alcoholic who ruined his liver. They do not give new livers to this type of person. Very, Very hard to hear when you dad is only 50 years old. But, with the amount of organs needed it is understandable.
ETA: not saying that an alcoholic and a mental ill girl are anywhere in the same ballbark, as my dad did what he did to himself, and the girl did not bring this her difficulties on herself. Just stating that it is an emotional hard pill to swallow for the family.
There is nothing out there (that I can see) from the doctors, but I don't believe it's a hoax because there is a TON of stuff out there on different sites about it, and there's even something on change.org, which is usually pretty correct right? (Correct me if I'm wrong please!)
I just think it's awful to deny this girl something that will save her life because SHE can't take care of herself. There's plenty of people that can (and will).
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[QUOTE]I also am not sure what the doctor having a Peruvian accent has to do with anything. I'm not criticizing the mother because she's obviously horribly upset, but if people are going to start talking about discrimination, let's not leave out that part.
Posted by emilyinchile[/QUOTE]
Thank you! I read her story and I know it's emotionally charged, but there is a lot of danger in coming to conclusions based on one side of the information. Did things go down that way? Possibly. Did she color in a lot what happened? Given her statements, most definitely.
CHOP is a highly regarded Children's Hospital. It's heartbreaking and I fully encourage the family to do whatever possible for their child, but my logical brain is siding with Mica on this one.
[QUOTE]Emily, I had the same thought when I read the mention of the doctor's Peruvian accent.
Posted by mica178[/QUOTE]
<div>I mean, I try not to assume that mentioning something like that is done in a negative way, but at the same time I just don't see a reason for that detail any more than I see a reason to say your doctor has big boobs or is super short or anything else that has no bearing on the situation.</div>
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[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : No. Change.org is the Wikipedia of petitions. Anyone can start a petition there.
Posted by LingerLonger1[/QUOTE]
Good to know, thanks!
What I want to know is if they openly said it's because of her disability. If they did, that's what bothers me. If there's other reasons (like mentioned, the rejection med sid effects etc) that makes total sense to me. But based on what the mom said (which I'd like to know if it's true or not) their basis was her disability, and that's what bugs me.
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[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : I mean, I try not to assume that mentioning something like that is done in a negative way, but at the same time I just don't see a reason for that detail any more than I see a reason to say your doctor has big boobs or is super short or anything else that has no bearing on the situation.
Posted by emilyinchile[/QUOTE]
She also made references to his "brown, pudgy" face.
There was a LOT of hyperbole in that post. I realize that the mom is extremely upset, and I'm not saying she shouldn't be, I think ANY parent would be while facing this. But I can't deny that there's a lot of hyperbole. She also doesn't ever directly say what the doctor said to her in the first place. She "repeats" it to him -- "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?” -- but she doesn't directly quote him. That sent up a red flag for me as well.
I feel heartless pointing these things out. <img src="http://cdn.cl9.vanillaforums.com/downloaded/ver1.0/content/scripts/tinymce/plugins/emotions/images/smiley-embarassed.gif" border="0" alt="Embarassed" title="Embarassed" /> I just...can't take this as fact when only half the story is presented.
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[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : But isn't it also the possible side effects of the anti-rejection drugs or other medications she might be on?
Posted by edielaura[/QUOTE]
<div>Mica (or someone) can correct me if I'm wrong, but anti-rejection drugs lower the bodies immune system to all kinds of illnesses. People with downs syndrome are (I believe) already more susceptible to illnesses. There is a lot more going on than if the child has people that can take care of her with just the issue of the anti-rejection drugs.</div>
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : Good to know, thanks!<strong> What I want to know is if they openly said it's because of her disability. If they did, that's what bothers me</strong>. If there's other reasons (like mentioned, the rejection med sid effects etc) that makes total sense to me. But based on what the mom said (which I'd like to know if it's true or not) their basis was her disability, and that's what bugs me.
Posted by chelseamb11[/QUOTE]
This is no different than telling an alcoholic they can't have a liver transplant IMO.
[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : Good to know, thanks! What I want to know is if they openly said it's because of her disability. If they did, that's what bothers me. If there's other reasons (like mentioned, the rejection med sid effects etc) that makes total sense to me.<strong> But based on what the mom said (which I'd like to know if it's true or not) their basis was her disability, and that's what bugs me.</strong>
Posted by chelseamb11[/QUOTE]
The mom stated that they talked about the side effects of the anti-rejection meds. What she saw and focused on was the pink highlighted Mental Retardation.<div>
</div><div>Doctors on transplant teams have hard decisions to make. The same organ they give to her could save someone else as well. They have the horrible job of deciding who is more worthy. I don't envy them at all. </div><div>
</div><div>Also, using the hospital resources to perform a contra-indicated transplant (therefore most likely not covered under insurance) just because a family member decided to donate is not an option. Want to see your health care costs skyrocket even more? This is a sure way to do it.</div>
“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”
“Yes, but it is different for her. She is already brain damaged and mentally retarded.”
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[QUOTE]In Response to Re: Little girl denied transplant because of mental disability : Good to know, thanks! What I want to know is if they openly said it's because of her disability. If they did, that's what bothers me. If there's other reasons (like mentioned, the rejection med sid effects etc) that makes total sense to me. But based on what the mom said (which I'd like to know if it's true or not) <strong>their basis was her disability, and that's what bugs me.</strong>
Posted by chelseamb11[/QUOTE]
If she can't take care of herself, administer her own meds, etc. then yeah, it's based on her disability. If would think that if her mental capabilities were higher, maybe there would be different results.
"So I sing a song of love, Julia"
06.10.10
BFAR:We Defined Our Own Success!