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  1. #1
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    Mom Claims CHOP Refuses to Give Special Needs Child Transplant

    http://www.nbcphiladelphia.com/news/...137437788.html

    Outrage flooded the pages of Facebook and other social networking sites around the nation after Chrissy Rivera wrote a blog post about an anger-inducing conversation she and her husband allegedly had with a doctor at the Children’s Hospital of Philadelphia.

    The doctor told them that he would not recommend a kidney transplant for their young daughter because she is mentally disabled, Chrissy Rivera said.

    "And I said to the doctor, 'is this what you want us to let happen -- do you want us to let her die?' And he said 'yes,'" Rivera told NBC10 Monday.
    ------

    The Riveras told NBC10 they got a call from CHOP on Sunday night.

    “They apologized for what happened. They didn’t necessarily have any answers. They did agree with us that some things need to be changed,” said Chrissy Rivera.

    The Riveras said the hospital invited them to meet with the organ transplant team.


    More at link....

  2. #2
    Kimberlyd125's Avatar
    Kimberlyd125 is offline Softball is for everyone. Fast pitch is for athletes.
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    Oh wow. I can't imagine.

    So since she is mentally disabled, she is not "worth" a new kidney???

    This infuriates me. She deserves to be treated like any other human.
    Glove Findin'
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  3. #3
    EUGENICS????!! NAZI GERMANY????

  4. #4
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    This saddens me on so many levels. First, no child should be turned away from medical treatment, especially life saving medical treatment, because their lives are not the same as those of us that were lucky enough to be born with higher IQ's and better test scores. So, she's mentally disabled. That doesn't mean that she can't feel joy or pain or happiness, and to insinuate that she should die because of her differences is sickening to me.

    It also saddens me because it's bad for the network of medical centers that holds the Children's hospital name. I've never been to Children's Hospital of Philadelphia, but I practically moved in to Children's Hospital of Detroit when our youngest son was born. His surgeon, anesthesia team, and genetic counselors were all from CHD. Luckily, my son is not delayed in any way that we have seen yet, but we all knew it was a risk just from the surgery, the meds, the extended stay in an isolette with no physical contact. It breaks my heart for this family that they had such a negative experience from people that are often so positive.

    I hope that if their claims are true, the doctor is immediately fired, or moved to research, where he can posit all the crazy theories he wants, and will be largely ignored and completely underfunded.
    JMO. Unless there's a link, I can't prove it.

  5. #5
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    The disabilities in a person with this syndrome are profound. As far as I can tell from the video the child doesn't talk and might never talk because of this condition.
    Just my opinion

  6. #6
    Kimberlyd125's Avatar
    Kimberlyd125 is offline Softball is for everyone. Fast pitch is for athletes.
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    She still deserves medical treatment.
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  7. #7
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    Ok, so she doesn't talk. The developmental effects of WHS can be devastating, but they can also be relatively mild. As autistic children have shown, language is not as closely related to true intelligence as was once assumed. It likely isn't even possible to fully and accurately assess her delays until they have found a way for her to communicate. She is not brain dead. She is not completely restricted from all normal activity. She has a family that loves her.

    She needs the transplant, and it simply is not that doctor's decision, certainly not his alone, whether she gets it or not. That's what really stuck in my craw: Who does this doctor think he really is?
    JMO. Unless there's a link, I can't prove it.

  8. #8
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    Quote Originally Posted by not_my_kids View Post
    Ok, so she doesn't talk. The developmental effects of WHS can be devastating, but they can also be relatively mild. As autistic children have shown, language is not as closely related to true intelligence as was once assumed. It likely isn't even possible to fully and accurately assess her delays until they have found a way for her to communicate. She is not brain dead. She is not completely restricted from all normal activity. She has a family that loves her.

    She needs the transplant, and it simply is not that doctor's decision, certainly not his alone, whether she gets it or not. That's what really stuck in my craw: Who does this doctor think he really is?
    God.

    NO PERSON, regardless of gender or position, has a right to determine what quality of life another person will have. This child has just as much right to medical treatment as any other. Everyone has something they can bring to this life they are given, even if it's just bringing love to their family.

    So WHAT if this child has some mental retardation? Does that make them less worthy of love? Not deserving of life? I. don't. think. so.

  9. #9
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    Quote Originally Posted by not_my_kids View Post
    Ok, so she doesn't talk. The developmental effects of WHS can be devastating, but they can also be relatively mild. As autistic children have shown, language is not as closely related to true intelligence as was once assumed. It likely isn't even possible to fully and accurately assess her delays until they have found a way for her to communicate. She is not brain dead. She is not completely restricted from all normal activity. She has a family that loves her.

    She needs the transplant, and it simply is not that doctor's decision, certainly not his alone, whether she gets it or not. That's what really stuck in my craw: Who does this doctor think he really is?
    I am not saying she shouldn't get the transplant. But I can look at it from the doctor's point of view-there are not many organs available, and when the child has a severe disability (and most likely will never be able to function independently), shouldn't her quality of life be considered? Of course it sounds like the family wants to do a donation, and if they can find a family member as a donor then I believe she should get the transplant.
    Just my opinion

  10. #10
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    A little girl from here that had Leukemia (she's in remission now) went to CHOP & had a bone marrow transplant. Her Mom did updates and I can remember how she really did not like CHOP that much.


  11. #11
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    This is the parent's blog post after the meeting: http://www.wolfhirschhorn.org/2012/0...a/brick-walls/

    Two critical points: 1) The doctor/hospital even refuses to do a transplant if a matched family member donates the kidney (i.e. this is not about a scarcity of organs).
    2) Several other parents of mentally disabled children write in the comments that they have received similar denial of treatment solely based on their child's IQ.

    This is disgusting discrimination of the worst kind.
    And twins plus little bro make NINE!! (I really thought we were done when I created this screen name. )

  12. #12
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    Quote Originally Posted by mom2six View Post
    This is the parent's blog post after the meeting: http://www.wolfhirschhorn.org/2012/0...a/brick-walls/

    Two critical points: 1) The doctor/hospital even refuses to do a transplant if a matched family member donates the kidney (i.e. this is not about a scarcity of organs).
    2) Several other parents of mentally disabled children write in the comments that they have received similar denial of treatment solely based on their child's IQ.

    This is disgusting discrimination of the worst kind.
    If the family donates the organ then I don't understand why they refuse. By family donating the organ some other child is not going to be denied the organ.
    Is the insurance not paying for it or why exactly don't they want to do it?
    Just my opinion

  13. #13
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    Quote Originally Posted by jjenny View Post
    I am not saying she shouldn't get the transplant. But I can look at it from the doctor's point of view-there are not many organs available, and when the child has a severe disability (and most likely will never be able to function independently), shouldn't her quality of life be considered? Of course it sounds like the family wants to do a donation, and if they can find a family member as a donor then I believe she should get the transplant.
    I look at it from the human POV. She is a human being, whose true quality of life cannot be appropriately determined at this time. The number of organs available means nothing when there is a family donor. To me, it's a slippery slope. Today, she doesn't get her transplant because she is mentally challenged. Next week, some 50 year old man doesn't get a transplant because he'd only live 30 ish more years anyway. Next year, none of us can even get a Motrin, because we don't fit into someone's arbitrary definition of normal or desirable.

    It's best that that train of thought just stop now, or the only people on earth will have IQ's above 180 and look like supermodels.
    JMO. Unless there's a link, I can't prove it.

  14. #14
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    This is the only explanation offered by the account on the blog post:

    The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”

    “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.”
    And twins plus little bro make NINE!! (I really thought we were done when I created this screen name. )

  15. #15
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    Quote Originally Posted by mom2six View Post
    This is the only explanation offered by the account on the blog post:
    I think it's rather obvious she won't ever be able to take these meds by herself, her parents will have to do it for her, and presumably they can manage to do it accurately.
    Just my opinion

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