Anthony DuLac
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Here's the link about the situation and in that link you can find the link to sign the petition:

http://www.lovethatmax.com/2012/01/should-kids-with-disabili... (the story and link to petition - though that's listed below as well)

http://www.change.org/petitions/childrens-hospital-of-philad...# (the Petition itself)


As a parent of a child (Noah) who needed a liver transplant, this is a topic near and dear to my heart. Please help share the news. It sounds like they're already recanting on their stance (hopefully).

Here's Amelia:




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Ari
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La vie est un jeu
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...and so began the eugenics wars. KHAAAAAN! devil
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Robert Wesley
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cool Signed that, as well with a few others that could use some more about theirs. whistle
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Rudy
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...wearing nothing but a robe made from a floral printed cotton sheet.
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Signed
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Andy Andersen
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Yep, signed
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matt erwin
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signed
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Chuck Meeks
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They are almost up to 7500 as I type this. I think that they will get the required number and I hope that it works out for them. I would be curious to know if they have contacted other hospitals to see what they could do about a transplant. We have quite a few good ones in Omaha including:

http://childrensomaha.org/

and

http://www.nebraskamed.com/transplant/

I wasn't sure where to put them so the family in question would be able to see them.
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Chuck Meeks
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And I want to know the name of the doctor/cyborg that told them that. What an ass. I am pretty sure that if it was me in that room and my child that he was discussing that security would have been called to "escort" me out.
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Tom McPhee
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When did boardgamegeek become a site that condoned harassing others? Is there anyone else making decisions we disagree with? Perhaps we should be launching hate campaigns against them too? Maybe the site's name should change to 'boardgamehatecampaignergeek'?
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I agree with the above poster re condoning harrassment.

The Doctor in this case is probably well informed of the supply of organs available for transplant, and has made the decision on the basis of there being better outcomes available in other patients. It's extremely sad, but there just aren't enough organs to go round.

I suggest that instead of harrassing him, perhaps those who were going to fire off angry emails sign up as organ donors?
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Chuck Meeks
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There... I deleted his information. Which I might add is his work information that is readily available at the hospitals website. His name is available in the actual petition. As to becoming an organ donor, I have been one for many years, including bone marrow, which involves a little more than checking a box. My with him issue is not that he decided that they were not going to give her a new kidney, which is sad in itself. It is HOW he did it and most of all WHY.
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Tom McPhee
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Would you rather he kept his reasoning secret?

As Sam Hayes suggests I have a very strong suspicion that this doctor is well versed in the ethics of organ donation. He probably struggles with the ethical dilemmas it throws up every single day of his life. I do not know, as I don't live and work there, but I also suspect he is but one of a panel of folk who are employed specifically to tackle these issues. Such panels typically involve doctors, professional ethicists and lay persons with an interest in these issues.

It's also worth considering that this child receiving a kidney also, by necessity, involves someone else NOT getting a kidney. How ARE we to make such decisions?




Edited to alter a grammatical mistake.
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Chuck Meeks
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I never suggested that she receive a kidney before someone else. Only that she should have a chance to get one. She was dismissed out of hand based solely on cognitive function. She will NOT be getting a kidney. Why not instead place her at the bottom of the list to receive one? She may not get one but there is a chance. The boards you mention create lists of people elligible to receive an organ. They also place people at different positions on the list based on the probable success of the transplant. In addition, the organ has to be a match to the recipient to ensure that it will not be rejected by the body. Do you know how many organs that ARE viable for transplant go to waste becasue there is not a match to any recipient? How would they now if they have an organ that she could use unless they place her on the list in the first place?

I say place her on the list to at least give her a chance. If an organ becomes available and no one else needs it, give it to her.
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Tom McPhee
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I can see the pros and cons of this course of action. Sadly the main con is that you give the family false hope when they should be, even more sadly, planning for the day their loved one dies. I do not have access to the actual numbers, but the UK, where I live and work, has reciprocal arrangements with other EU countries should an organ not be matched with an indigenous organ recipient in waiting.

I also doubt she was dismissed SOLELY on the basis of her cognitive function. We know that her genetic condition also causes heart defects. Even grown adults without genetic defects, but with heart disease do not manage operations at all well. I suspect this ALSO played into the reasoning of the ethics panel. I wonder if the naturally upset and extremely distressed mother heard only the phrase 'mentally retarded' (or words to that effect) during the doctor's discussion. I work with patients every single day of my working life and it's amazing the number of times when re-checking later on what they have taken away from a discussion is either only a part of, or even sometimes (especially in incredibly emotionally fraught situations) vastly different from what I KNOW I actually said.

Another major con of the new development of course is that we show that the real way to get an organ transplant is to scream and shout about it, and not only that, potentially also harass and bully the ethics team into doing it.
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Chuck Meeks
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tommcphee wrote:
It's also worth considering that this child receiving a kidney also, by necessity, involves someone else NOT getting a kidney. How ARE we to make such decisions?


That is not how a transplant works. There are many factors to decide if an organ is transplanted. First it has to be type matched to a recipient. Then there is a time limit for it to be usable. Then there is the health of the potential recipient. If they even have a cold they most likely will not do the transplant because of a compromised immune system. It is not as simple as saying that if one person gets it another does not. MANY organs go straight to the incinerator becasue there is not an elligible recipient.

So if the there is a recipient for a kidney that happens to be the same type as the little girl in question and she can't get to the hospital for the transplant or is sick, who gets the kidney then? No one because she isn't on the list.
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Tom McPhee
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Komodo wrote:
tommcphee wrote:
It's also worth considering that this child receiving a kidney also, by necessity, involves someone else NOT getting a kidney. How ARE we to make such decisions?


That is not how a transplant works. There are many factors to decide if an organ is transplanted. First it has to be type matched to a recipient. Then there is a time limit for it to be usable. Then there is the health of the potential recipient. If they even have a cold they most likely will not do the transplant because of a compromised immune system. It is not as simple as saying that if one person gets it another does not. MANY organs go straight to the incinerator becasue there is not an elligible recipient.

So if the there is a recipient for a kidney that happens to be the same type as the little girl in question and she can't get to the hospital for the transplant or is sick, who gets the kidney then? No one because she isn't on the list.


I've been trying to find the numbers, do you have a reference for the 'Many go to waste' statement?

I am also well aware of how transplant systems work as I do assess people psychiatrically pre-donating, and sometimes also pre-receiving of organs, albeit here in the UK.
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Chuck Meeks
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I pretty much agree with what you said above. She may have only heard what she wanted to hear but I can only go on the information that I have from the letter in question. I have had dealings with transplant boards and I can tell you from experience that the way they make decisions at times makes little sense and out of synch with ethical decisions. It had to do with my father and I think you would be surprised by what I had to say about the issue. If you would like, I will go into it and tell of my experience with a transplant panel.
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Chuck Meeks
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Here is a piece talking about heart donations. I removed the first part as it was not relevant to the discussion.

Sharon Gloger Friedman
, Boston Health News Examiner
January 11, 2012

A race against time
Despite transplantation advances, donor hearts are still transported in much the same way they were in 1976 when the first heart transplant was performed. The heart is removed from the donor, injected with a chemical to preserve it, placed in ice in a common picnic cooler and rushed to the waiting recipient. Once the heart is removed, it remains viable for 4 to 6 hours, limiting the distance it can be transported. A heart that is removed in New York, for example, could not be donated to a waiting recipient in San Francisco. This limitation means that more than half of donated hearts go unused because the donor is too far from the matching recipient at the time of the donation.
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Chuck Meeks
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By the way... Here is a link to the mother's side of the story regarding the encounter with the doctor. Granted, it is only one side of the story. What is disturbing to me is that he said that they would not do the operation even if a family member donated a kidney for her.

http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/
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Chuck Meeks
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Mental retardation should not be a factor at all! If OTHER factors are at play, that is a whole different issue, but mental retardation itself is irrelevant.

Here is a link to a study that shows that mental retardation has little effect on survival rates:

http://researchnews.osu.edu/archive/orgtrans.htm
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Chuck Meeks
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I can go along with that. I did say it was only one side of the story earlier but I can only go on what I have read. The hospital can't really say a whole lot because of confidentiality rules.
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J
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Moved to BGG Community Forum
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Anthony DuLac
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tommcphee wrote:
Would you rather he kept his reasoning secret?

As Sam Hayes suggests I have a very strong suspicion that this doctor is well versed in the ethics of organ donation. He probably struggles with the ethical dilemmas it throws up every single day of his life. I do not know, as I don't live and work there, but I also suspect he is but one of a panel of folk who are employed specifically to tackle these issues. Such panels typically involve doctors, professional ethicists and lay persons with an interest in these issues.

It's also worth considering that this child receiving a kidney also, by necessity, involves someone else NOT getting a kidney. How ARE we to make such decisions?


Somehow we manage to make those types of decisions - well there's a super involved process for how patients get on transplant lists and receive a ranking priority for that list.

If you're complaining that someone gets a kidney and someone loses one, well that's how it works with organ donation - someone usually has a release for organ donation in the event that something bad happens to them. It's a super noble cause and it's up to them.

Regardless of what other topics you may have brought up, they're merely sidetracks - the issue is that some moronic doctor thought this little girl was less than a person due to her disability. Last I checked, that's unethical in the medical profession. \

The guy deserves whatever harassment he receives, imho - not that I'm telling anyone to do that.
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Anthony DuLac
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tommcphee wrote:


Another major con of the new development of course is that we show that the real way to get an organ transplant is to scream and shout about it, and not only that, potentially also harass and bully the ethics team into doing it.


Because they should blithely sit by and allow some clueless doctor to condemn their child to death over a mental handicap? No way. That's patently ludicrous and borderline criminal.

I'm not surprised to note that you're from a European country. I've come to expect that type of perspective from someone with the European background; Europe can be (at times) so progressive that they've progressed beyond the humanity of their own professions. shake But there are also some great things about our European medical counterparts that we could learn from as well, of course.
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Anthony DuLac
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tscook wrote:
I'm not buying into her sensationalized and poorly written side of the story at all.


I don't think that the quality of her writing defines a story's inherent veracity. And the sensationalistic aspect of her story was obviously by necessity, so I find nothing fishy about that, either. Your points seem unfounded, from what I can see of this situation.
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