Saturday, January 14, 2012

I am ashamed and livid

Update: 1/14/12 This is the link for The Children's Hospital of Philadelphia's response.
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I am ashamed of the medical community.  Positively ashamed.  I am livid.

It is 2012 and I like to think that the United States has come a long way in accepting those with disabilities. However, after reading about one's family's journey, I can see that really have not come that far along.  Some of you may have seen this on Facebook or in the news, but recently a young girl was denied placement on a kidney transplant list all because she has mental retardation [MR].  Essentially, her life is not worthy of saving.

Little Amelia has Wolf-Hirschorn syndrome which is a genetic disorder characterized by distinct facial features, poor muscle tone, and developmental delays.  Little Amelia is also in kidney failure and requires a kidney transplant in the next 6-12 months or she will die.

As the family took Amelia in for bloodwork, they were led into a conference room at the Children's Hospital of Philadelphia (yes, I used to work there) where pieces of paper were shoved into their face.  The words "mentally retarded" and "brain damaged" were highlighted in pink.   Those highlighted words are why she cannot have the transplant. . . even if a family member were to donate a kidney.  You can read more here.

I would like to believe that this is an isolate incident, but it is not.  Stories are cropping up from across the United States about similar situations.  No transplants all because of mental retardation.  This means that Amelia and children like my Ellie cannot receive life saving transplants.  That they are sentenced to death  all because of mental retardation.

Who decides these things?  Who makes the decision on whose life is worth saving?  Where are the ethics in this?  Where is the "do no harm" in the medical community?  I just do not understand.

We need to unite and fight this!  There is a health petition the you can sign to urge CHOP to change their mind about Amelia.  You can find that here.  As I write this, there are already over 4,000 signatures.  You can also storm CHOP's Facebook page here.


Note: This post is my reaction and thoughts with regards to a blog post written by Amelia's family.  Her story can be read firsthand here.  I do not know the doctor's side of the story and I fear we may never know due to HIPPA privacy regulations.  My issue is with the medical teams involved in making these transplant decisions and not with the actual facility of CHOP.



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4 comments:

  1. what!!!!!!!!!!! signed, bombarded and shared! livid with you friend xxxxxxxxxxxxxx

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  2. This story hits very close for me too. My little girl has Down Syndrome (as you know), and the cognitive and developmental delays that go along with it. My daughter has also been in CHoP's care since she was an infant - mostly for therapy reasons, but also for visits with specialists there as well. My experience so far from all that I have come in contact with so far is nothing but kindness and compassion. This particular incident resonates with me because I can't even begin to imagine anyone, especially a doctor, telling me my daughter did not have a right to life based on her delays and current abilities. I am a fan of CHoP, but I am not a fan of the way this situation was handled in the least bit!

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  3. So angry and sad. :( This just leaves me speechless. I hope the roar of angry voices educates some people. Thank you for sharing this.

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  4. I had already heard the story, but did not know there was a petition. Signed it just now!

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