Who decides?

This is Amelia:

Amelia is 3. There are a lot of things to know about Amelia, but one of those things is this: Amelia was born with Wolf-Hirschhorn Syndrome. Another thing you should know about Amelia is that she is loved. In her mother’s words:

“I was wrong about fixing Amelia. She never needed to be mended, repaired, refurbished. Mia is content with her life. A happy child whose perfect day involves swinging in the Pooh swing, batting her favorite bug under her toy mat, and rolling around on the living room rug to bang her legs on the dog’s head. In her eyes, her life is perfect. And after two years of having her in my life, in my eyes her life is perfect.”

And here is one more thing you should know: Amelia needs a kidney transplant. And Amelia has been denied this transplant, because she is “mentally retarded”.

There is really nothing that I can write that can convey the tragedy of this situation, so again I will let Amelia’s mother speak:

“I am going to try to and tell you what happened to us on January 1o, 2012…”

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About waltzingmtilda

I try not to take life and politics too seriously, which is why I rely so heavily on my friends to do the hard parts (such as thinking). I can usually be found wreaking havoc on the Internet and stalking Adam Levine via Twitter. Also I am quitting smoking really soon.
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13 Responses to Who decides?

  1. stellap says:

    I noted two comments to Amelia’s story. Someone suggested that perhaps Amelia’s case will lead to a reconsideration of organ transplant criteria at CHOP. A woman, who has done the same for her child, suggested that she be taken to Hershey. Definitely the parents should seek alternative care for Amelia, but it is a good thing that her story has been given so much publicity, as it may help other children in the future.

    The treatment they received is shameful.

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    • “The treatment they received is shameful.”

      Indeed. I have seen comments that perhaps we’re not gettng the whole story, and CHOP says it does not deny these procedures based solely on the patients mental cognition. And that may be true, BUT the way this particular doctor handled the situation certainly makes it seem like they do. Honestly? If I were Chrissy Rivera, they would have had to call security on me.

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  2. tnwahm says:

    This is just the next logical step of killing a baby in the womb because of a birth defect. What does a couple of years make?

    Also, imagine how much more of this will take place if Hellcare gets implemented? How many government bureaucrats will be just like this doctor?

    I am so grateful for the medical advances in technology that have enabled the life-saving practices of dialysis and kidney transplants. I shudder to think of what would have happened with my dd without them.

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  3. Thanks for the post, WM. I’ll never understand. How did we get this far into the matrix? No tellin’.

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  4. RosalindJ says:

    I am stunned. When did this become a standard protocol – something medical people dared to put into writing? I remember the controversy over self-destructive people – who at the end of things – recieved a transplant.

    As others have stated, seeking care elsewhere will yield better results. At least as long as alternatives aren’t outlawed, or SCOTUS rules in favor of the People. God bless you and your daughter.

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  5. ZurichMike says:

    I can understand the parents’ frustration, and am likewise shocked at the lack of the hospital’s bedside manner, but I think the blog post from the mother is (understandably) emotional, yet does not convey all of the facts of this case. I got flamed on another site for daring to mention in a similar case that perhaps the best interest of the child is not being served, but rather the vanity of the parents. Hear me out. In the other case, parents were outraged about a similar lack of concern for their two year-old, who suffered from a number of congenital defects. Yet the parents put this poor little child through thirteen major surgeries by the time the child was two. In other words, the child was under full anesthesia every two months of his life (a danger in itself) for surgeries lasting 4-6 hours each, with weeks of painful recovery (if that is the word) between surgeries. The cost was astronomical — over $5 million to date — and the prognosis on all fronts was marginally better than before. At some point you have to ask whether such heroic efforts are truly in the child’s best interests. It is heartbreaking, of course, to have to lose someone so young and with (from our perspective) a full life before him (or what we think the child will accomplish), but we are not medical magicians, our bodies are mortal, and not everything is possible for every patient, no matter how much medicine has advanced in the past 100 years (this child would probably have long departed this earth if she had been born just 50 years ago).

    For the posted case, perhaps the transplant would cause increase in medical care or seizures (or worse), and a staggering cost of resources with questionable medical outcomes. What are other factors that need to be balanced here? Although I applaud a parent who ferociously protects a special needs child, I see no balancing of needs versus wants, realities versus hopes, practicality versus theory, and simple supply versus demand. With a long waiting list of those who need transplants, why does this case deserve priority?

    Respectfully,

    ZurichMike (now donning his flame-retardant outfit)

    Like

    • I would never flame you, silly boy!

      Your response is well thought out and well written, and I can absolutely understand your argument.

      The reality of this story is: we can only go on the side of it that’s been told. The hospital cannot comment due to patient privacy. I’m sure that the mom’s telling of the story is colored with extreme emotion, and maybe she is not sharing the other reasons that make Amelia ineligible. We don’t know. BUT…if “mental retardation” is anywhere on that list of reasons…that’s the scary, heartbreaking part. I know that kids with W-H, DS, etc are also prone to any number of medical conditions that could be factors when it comes to transplants. I just can’t get past the fact that cognitive abilities rate anywhere in the decision.

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    • Oh, and one other point…the parents are planning on donating the kidneys, and if neither is a match they have other family members willing to donate. So, Amelia would not be on a waiting list – rather, she has a list of people waiting to help her!

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    • Although I respect your approach here ZM and what you have stated may in fact be what they are balancing. It is the unfortunate truth that someone somewhere has to make these kind of decissions that are always tough.
      But too many times we see this type of decisssions based on MR or another quality of life decission including your status in life. It is written in their medical and insurance guidelines. It is a god attitude that just maybe comes with the title they carry.
      For this family and the families like it, all I can say is “go mom go, fight for your childs life”!
      Everybody has the right to fight for their children’s lives. I would do anything humanly possible (with in my Christian beliefs) to fight for the lives of mine and I have. I am now talking on a personal note here. My son recently had brain surgery that saved his life. He would have died because we did not have the “option” available to us becasue somebody else was playing god behind our backs and would not tell us what the true options were. Little did they know they were up against my family and (my God) prayers. Nothing is worse than somebody else thinking they are doing the right thing for you and not telling you. All options should be available for every human being. At least the options. Who are they to judge anyone who they think (or educated guesses) can or cannot afford a procedure or whether their “quality of life” is good enough or whether they should die because they are in a coma or something. They become god in these cases. It happens all the time. And I have horrific sadness for those parents who don’t have the tennacity that I personally have. There are so many of these unnecessary deaths because the medical personnel don’t tell us stuff. The real problem imho is that mankind has taken God out of everything and they have become their own gods. They give hope if they choose to or take it away if they deem fit too.
      I worked in the one of the best Childrens hospitols in the Pacifc for several years. It was a private hospitol at that. The kind of decissions that are made behind close doors and without the parents knowledge never ceased to amaze me. It really becomes a war between good RN’s and Doctors. The other fight was how they do “research” on desperately ill patients. It is an outrage. I could go no and on in the details but it would be futile here to do so.
      I almost lost my son, not to mention my wife and daughter, due to this exact kind of decission that I ended up taking into my own hands. I also would like to mention that many doctors won’t even consider certain things due the real fear of lawsuits. Many parents will say I would not sue you but sorry it is the lawyers that get involved that take em to hell in court. Lovely godless world. This is what all the PROGS want for US those elite idiots.

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  6. This made The Blaze!

    3-Year-Old Denied Kidney Transplant Due to Mental Retardation Receives Slew of Online Support

    It’s upsetting enough for parents to have to consider transplant procedures for their toddler. But a meeting with a transplant team at the Children’s Hospital of Philadelphia (CHOP) quickly became controversial for one couple over two words cited as the reason the couple’s child was being denied a transplant: mentally retarded.

    Last week, Chrissy Rivera, her husband Joe and their 3-year-old daughter, Amelia, attended a meeting at CHOP, where Amelia’s primary physicians have been since her infancy. This meeting was, however, to discuss a kidney transplant Amelia would need within six months to a year. The catch, at least for some doctors, is that Amelia has Wolf-Hirschhorn syndrome.

    Rivera explains in a blog post that her daughter, whose condition includes symptom’s like slow development, seizures and mental retardation, was told she was not be eligible for the kidney transplant she would need because of “brain damage” and “quality of life.” Here‘s some of Rivera’s account…

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