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I got this thru the Seattle PI:

What is going on here?  The doctor had the gall to tell the parents that their daughter wasn't elgible to have a transplant because she is mentally disadvantaged:

Rivera wrote that a doctor, whom she did not name, told her and her husband, Joe Rivera, that Amelia wouldn't be eligible for a transplant because of her quality of life and her mental condition.

"I put my hand up. 'Stop talking for a minute. 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?'" she wrote. "I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded."

Can you call and email Childrens Philly and let them know the whole world now is watching this?  

Folks, this type of discrimination needs to stop now.  DBS (Death By Spreadsheet) should not be an option for anyone.

Update: edited for title...

Update 2: The article I listed above has been changed since I started reading it.  They do mention she does have a genetic disorder Wolf-Hirschhorn syndrome.  I will be reading up on it asap today.

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Comment Preferences

  •  Tip Jar (8+ / 0-)

    Silence = Consent. Don't be silent any longer

    by doingbusinessas on Wed Jan 18, 2012 at 10:48:06 AM PST

  •  Please check out (10+ / 0-)

    this from The situation may be a bit more complex because she has a rare genetic defect that causes both medical and physical disabilities. It is called Wolf-Hirschhorn syndrome.

  •  Transplant lists are not 'death by spreadsheet'. (11+ / 0-)

    They are not filled by HMO's or insurance agencies.

    They are 'best use' of extremely limited resources (organs) based upon complex bioethical decisions, and yes, quality of life is one of the factors often used.   Drug addiction is now recognized as a disease, but nobody gets up in arms when drug addicts or alcoholics are refused placement on such lists often even after they've been 'clean' for extended periods.

    There simply are no 'easy' answers as to who is 'deserving' to be on transplant lists.  The best hope for many who will be waiting for organs is likely to be new technologies to grow or 'build' replacement organs, but it's a tough call in the now, before those technologies have come to fruition.

    •  Dr. E... (2+ / 0-)
      Recommended by:
      gooderservice, Dirtandiron

      I understand that this may not be the case of DBS, but to have the child's doctor tell the parent that their child may not be put on the transplant waiting list because they have a mental/genetic disorder is discriminatory.  This is a quality of life issue.

      Silence = Consent. Don't be silent any longer

      by doingbusinessas on Wed Jan 18, 2012 at 11:39:24 AM PST

      [ Parent ]

      •  All such decisions are 'discriminatory'. (9+ / 0-)

        That's the whole point of transplant lists.  You have 'x' number of organs, you have to decide how they can be 'best used'.  Every single decision is about discriminating based upon a host of factors.

        How soon is the person likely to die?  Will their death send a family into poverty?  Are they likely to engage in activities, or do they have other diseases that will simply re-damage the organ in question?

        The doc may have said it poorly, or even be wrong as to whether or not the kid would be accepted.  You submit the patient and let the bioethics panel decide.  But quality of life is very likely to be a part of that decision, whether or not people think it 'should' be.

        •  I donated my mother's organs and I know that the (5+ / 0-)

          process is totally dependent upon the organ match and the health of the patient.  I had to explain to a cousin of mine why it was that my mother's kidneys did not go to his daughters who needed kidneys.  Despite the genetic relationship, there was no tissue match.

          I watched a friend of mine who was a recovering alcoholic play the delicate waiting game for a liver.  He had to be alcohol free for a year (breathalizer every day) before getting his liver.  He was almost nearly too sick to receive one.

          I'm sure this girl's father is heartbroken, but even when you get on the transplant list, there are no guarantees.

    •  You probably get this a lot, but... (0+ / 0-)

      Is that your real name? I don't know about anyone else, but I'd probably be terrified of being treated by someone named Dr. Bloodaxe, hahah..

      Jokes aside, I think you're absolutely right in pointing out the hypocrisy of those when they complain about this incident and don't bat an eye when an alcoholic or drug addict is denied a transplant. Perhaps it has something to do with the fact that the person being denied in this case is a child?

      Either way, since organs are a limited resource, there's never going to be enough to go around, and I think it's appropriate that these decisions are based on who would benefit best from the transplants, rather than a simple queue system or whatnot.

      "A man chooses, a slave obeys." "We all make choices, but in the end our choices make us." - Andrew Ryan - Bioshock

      by Valdearg on Wed Jan 18, 2012 at 12:54:23 PM PST

      [ Parent ]

  •  asdf (2+ / 0-)
    Recommended by:
    Unit Zero, ladybug53

    I've been seeing this one all over the mommy lists.

    The doctor said the girl would need medications following a transplant, which were likely to cause seizures and further brain damage. He talks of quality-of-life.

    Were it my child, I'd want further explanation of "quality of life". I expect a doctor's definition is different from a layperson's.

    Weathering Michigan's recessions since the '70s.

    by jennifree2bme on Wed Jan 18, 2012 at 11:55:30 AM PST

  •  There are alot (0+ / 0-)

    of those little "rules" that slip by unnoticed.

    It is done under of the excuse there are not enough organs to go around so we have to make sure the recipent will care for it.

    Afriend of my husbands, a decorated Vietnam Veteran died because the transplant board at Oregon Health Sciences University decided his life style was not conductive to transplant success. He was denied a liver transplant.

    They cited the following reasons 1) He was single (he had the same girl friend and they had lived together for 13 years. She could not marry him because she was a widow of someone who was a combat casuality. If she remarried she would lose the support for her 14 year old from the military and they could not afford that) 2) He was once a drug addict (he had not touched drug or drink in over 20 years and was a drug and alcohol peer councilor and mentor on a volunteer basis through the VA ) 3) He had no children (Only the four of someone elses he had raised) 4) He was non religious (I thought it was okay in this country to believe whatever suited you)

    At the same time I read about a pastor of a hell fire and brimstone church in the same town recieving his second liver transplantthe first had apparently gone bad after 10 years. He had a 2nd wife of 5 years, and three grown children. I don't begrudge that man his life but I find it offensive that my husbands friend was given a death sentence because his life did not conform to the personal moral values of the transplant board members.

    It is the heart that makes a man rich. He is rich according to what he is not what he has -Henry Ward Beecher

    by PSWaterspirit on Wed Jan 18, 2012 at 05:41:06 PM PST

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