Should a child with an intellectual disability be denied an organ transplant?

[Anonymous]

it is really insulting to everyone who died in the Holocaust that you are comparing someone who dislikes the idea of keeping a cat alive via medical assistance to killing people for their religious beliefs.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Can we just let this thread die? I think its clear that there are a few Moms with chips on their shoulders about disabled kids that have a deep distrust in doctors.

No amount of reasoning will convince them that 1) a panel of doctors decided this for many reasons 2) the parents probably are oversimplifying or at worse lying and 3) this is a one-sided story in the media so there isn't much to discuss.

This is part of what is so offensive. I hope you are humbled one day in life, because you could stand to be. Mother's trying to save their children and have them treated with dignity and respect do not deserve to be described as having "chips" on their shoulders. What a misogynistic way to view the whole thing. The little girl's father is outraged too. And guess what!? Whether or not you want to believe it, or have ever had reason to encounter it, not only do doctors have unfair biases about disabled children (some of the time, of course not all of the time) but lots of other people do too...like you.

We don't know all the sides to this story. But parents have to advocate for their children. And one way or another CHOP handled this poorly. If this little girl is too medically fragile to receive a kidney, why did her "mental retardation" even get brought into the discussion. I understand it is easier for you to believe that the parents are lying than that an institution such as CHOP would discriminate, but I believe that it's possible.

A poster above compared trying to get a kidney for you three year old daughter to someone trying to prolong the life of a cat or dog. The truth is a lot of disabled people have people devalue their lives all the time, and just because you don't want to hear about it or don't have patience for it doesn't mean it isn't so.

You have a lot of baggage and it has nothing to do with other people, it has to do with what is or was inside of yourself. You have no idea how CHOP handled the situation since its private, so why make assumptions based on hearsay?

[Anonymous]

Anonymous wrote:

Anonymous wrote:I personally don't understand this obsession with artificially prolonging life just for the hell of it.

Folks have dogs and cats on 3 times a day injections to force them to live into their late 20's. I had one coworker whose cat went blind and was diabetic. The poor cat was miserable and wouldn't walk around much because she was in pain. Rather than letting nature take its course, she pumped the poor cat full of medicine/pain-relievers because she couldn't handle dealing with the loss.

80-90 year old people taking dozens of medications just to "exist". I'm not talking about elderly people who are "present", but rather those who are damn near in a vegetable state.

Severally mentally retarded people receiving organ transplants, expensive medical treatments when their life expectancy is short (less than 20 years). What makes it even worse is that these severally retarded children/people have no say in their treatment and are in pain for reasons they can't understand. Why? Cause Mommy and Daddy couldn't deal with letting go.

Brain-dead people being kept alive by way of a machine. (Terry Schiavo comes to mind).

It really is obscene.

Boy you really missed your era. You'd fit right in with the Nazis. Lovely.

Please elaborate. How in the world is the above statement comparable to condoning genocide?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Can we just let this thread die? I think its clear that there are a few Moms with chips on their shoulders about disabled kids that have a deep distrust in doctors.

No amount of reasoning will convince them that 1) a panel of doctors decided this for many reasons 2) the parents probably are oversimplifying or at worse lying and 3) this is a one-sided story in the media so there isn't much to discuss.

This is part of what is so offensive. I hope you are humbled one day in life, because you could stand to be. Mother's trying to save their children and have them treated with dignity and respect do not deserve to be described as having "chips" on their shoulders. What a misogynistic way to view the whole thing. The little girl's father is outraged too. And guess what!? Whether or not you want to believe it, or have ever had reason to encounter it, not only do doctors have unfair biases about disabled children (some of the time, of course not all of the time) but lots of other people do too...like you.

We don't know all the sides to this story. But parents have to advocate for their children. And one way or another CHOP handled this poorly. If this little girl is too medically fragile to receive a kidney, why did her "mental retardation" even get brought into the discussion. I understand it is easier for you to believe that the parents are lying than that an institution such as CHOP would discriminate, but I believe that it's possible.

A poster above compared trying to get a kidney for you three year old daughter to someone trying to prolong the life of a cat or dog. The truth is a lot of disabled people have people devalue their lives all the time, and just because you don't want to hear about it or don't have patience for it doesn't mean it isn't so.

Also I was referring to you PP and whomever else is posting this one DCUM, not the parents of the little girl. But of course you wouldn't see that

[Anonymous]

Ok, the PP said, basically, it's offensive the lengths people will go to to prolong life (that is over/worthless in their estimate). For instance people will go to lengths to prolong their dog's life. Therefore the poster drew a comparison between the lengths someone will go to to prolong the life of their child, with the length someone will go through to prolong the life of their dog. That is offensive. The value of the life of a dog, and that of a child, are not comparable. The lengths someone will go to to save a child's life should not be viewed in the same light as the lengths someone will go through to save a pet.

Furthermore the Nazis did not just exterminate people who were Jewish. They also went after old and disabled people. The PP finds it disgraceful that anyone would treat 80 year old's (who suffer for dementia or are not "present" as they put it), or severely disabled people, in order to prolong their lives because they make a judgement about their quality and worth of life. And we are right back to that again. Just because you don't think that a disabled person's life isn't worth saving or prolonging, doesn't mean it isn't. Your callous undervaluing of life that YOU see as useless has similarities to the Nazi point of view. They didn't think old people or disabled people deserved to be kept around either. Why do you get to say who's worthy of life? Why should you be able to dictate what care a disabled child or an older person gets just because YOU have decided their life isn't worth living? Your point of view is obscene. Read this: http://ourlittleseal.wordpress.com/

Maybe it'll humble you a little. It should.

[Anonymous]

^^^^I meant to say read the latest post on that blog (I am not affiliated with the author). It speaks directly to this issue.

[Anonymous]

Anonymous wrote:Ok, the PP said, basically, it's offensive the lengths people will go to to prolong life (that is over/worthless in their estimate). For instance people will go to lengths to prolong their dog's life. Therefore the poster drew a comparison between the lengths someone will go to to prolong the life of their child, with the length someone will go through to prolong the life of their dog. That is offensive. The value of the life of a dog, and that of a child, are not comparable. The lengths someone will go to to save a child's life should not be viewed in the same light as the lengths someone will go through to save a pet.

Furthermore the Nazis did not just exterminate people who were Jewish. They also went after old and disabled people. The PP finds it disgraceful that anyone would treat 80 year old's (who suffer for dementia or are not "present" as they put it), or severely disabled people, in order to prolong their lives because they make a judgement about their quality and worth of life. And we are right back to that again. Just because you don't think that a disabled person's life isn't worth saving or prolonging, doesn't mean it isn't. Your callous undervaluing of life that YOU see as useless has similarities to the Nazi point of view. They didn't think old people or disabled people deserved to be kept around either. Why do you get to say who's worthy of life? Why should you be able to dictate what care a disabled child or an older person gets just because YOU have decided their life isn't worth living? Your point of view is obscene. Read this: http://ourlittleseal.wordpress.com/

Maybe it'll humble you a little. It should.

I am not the poster you are sparring with, nor do I agree with him or her.

But I read the blog you pointed to, and I have to say it captures very well the problem with this thread. The writer posts:

Whose life matters? Who counts? Which bodies are worth saving? Protecting? Loving?

Do you realize why this is offensive to people who see the other side? Apparently we must not think this child is worth saving/protecting/loving. Nazi poster aside, I think there are plenty of people who have sympathy but realize there is another, unnamed, unblogged about child who will not receive that kidney but who could have lived a long life but will die. And all we will say is "a kidney didn't arrive in time. That's a shame". But it's more than just a shame. It would be the direct result of the decisions that a panel of doctors make.

Once again I think that a debate on the merits is worth having. But when one side shouts "eugenics!" and phrases their arguments as "who is worthy of love?" it does an injustice to this issue, just as much as the wackos on the other side.

[Anonymous]

^^^^^^^^^^^^^^sigh.

we have already established that the family wants to get a family or friend, ADULT, a LIVING donor to donate. So there is no poor, normal, more "worthwhile" child who will be passed over because said family or friend wouldn't be donating to them. So no, no other kid would die while this little worthless "retarded" child got her kidney.

[Anonymous]

Anonymous wrote:^^^^^^^^^^^^^^sigh.

we have already established that the family wants to get a family or friend, ADULT, a LIVING donor to donate. So there is no poor, normal, more "worthwhile" child who will be passed over because said family or friend wouldn't be donating to them. So no, no other kid would die while this little worthless "retarded" child got her kidney.

In all that I've read to date on this subject, I've never seen the family specify that they are planning on using an adult. If they were, I'm not sure they would be at CHOP because the transplanting of adult kidneys into children is a new thing and I've not seen anywhere that says CHOP has such a program.

[Anonymous]

Anonymous wrote:

Anonymous wrote:^^^^^^^^^^^^^^sigh.

we have already established that the family wants to get a family or friend, ADULT, a LIVING donor to donate. So there is no poor, normal, more "worthwhile" child who will be passed over because said family or friend wouldn't be donating to them. So no, no other kid would die while this little worthless "retarded" child got her kidney.

In all that I've read to date on this subject, I've never seen the family specify that they are planning on using an adult. If they were, I'm not sure they would be at CHOP because the transplanting of adult kidneys into children is a new thing and I've not seen anywhere that says CHOP has such a program.

From CHOP's own site, they will not allow donors under 18. Quoted above. Also quoted above many children get kidneys from parents, it is not "experimental."

[Anonymous]

Let's assume that the following are true:
1) the child was denied the transplant based primarily upon her intellectual disability and is otherwise a viable candidate for continued survival and quality of life afterwards
2) an adult kidney could be transplanted into this child, and a family member is a match
I sincerely hope that the parents are pursuing another hospital to do the procedure. While outrage at CHOP would be completely understandable given these assumptions, presumably another hospital or institution would accept the girl for a transplant, and the primary focus should be moving on and and getting it done elsewhere to ensure the child's continued survival.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Good question. I understand why we used to send young men to fight wars - they are the strongest, and fighting was all about strength. Nowadays though there are many other options. I know many people in their late 70s who would be very good for driving tanks, manning trenches etc. Perhaps it is time that we as a nation rethink our cannon fodder.

I don't know many 70 yos who can drive a Chevy very well, never mind a main battle tank. Our armed forces would either go too fast or too slow, and constantly have to stop for pee breaks. And they'd tailgate a lot.

You need quick reflexes and on top of that, um, there have been many accidents when the elderly seem to confuse the brake and the accelerator, resulting in serious injury and death to bystanders.

The point is not that they would be better soldiers, but that they would be more expendable.

Would there be some accidents as confused old people drove their tanks around?

Yes, there would.

Would these accidents involve an acceptable attrition rate?

Yes, they would.

War isn't always neat and pretty, it can be bloody and cruel. Far better to send those at the end of their lives into such a situation than the young, fit men and women that we need to produce the next generation of young people, who can, in time, become the next generation of ageing soldiers who can keep this great nation safe.

Ok, you have a great point! No sarcasm intended.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I personally don't understand this obsession with artificially prolonging life just for the hell of it.

Folks have dogs and cats on 3 times a day injections to force them to live into their late 20's. I had one coworker whose cat went blind and was diabetic. The poor cat was miserable and wouldn't walk around much because she was in pain. Rather than letting nature take its course, she pumped the poor cat full of medicine/pain-relievers because she couldn't handle dealing with the loss.

80-90 year old people taking dozens of medications just to "exist". I'm not talking about elderly people who are "present", but rather those who are damn near in a vegetable state.

Severally mentally retarded people receiving organ transplants, expensive medical treatments when their life expectancy is short (less than 20 years). What makes it even worse is that these severally retarded children/people have no say in their treatment and are in pain for reasons they can't understand. Why? Cause Mommy and Daddy couldn't deal with letting go.

Brain-dead people being kept alive by way of a machine. (Terry Schiavo comes to mind).

It really is obscene.

Boy you really missed your era. You'd fit right in with the Nazis. Lovely.

I don't think it's fair to jump to the Nazi place. I wouldn't classify as obscene people trying to extend their loved one's life, but I think the PP is otherwise correct. We do have an obsession with trying to extend life whether or not it'll work or be worth it. My husband knows my end of life wishes, and I'm sorry, but if I had a child who was born into a life of misery and pain, not that the little girl in question lives such a life, I would not want him or her to linger for the next surgery. I watched as very painful, very expensive, and ultimately useless treatments were used to try to extens my grandparents' lives. I don't want that. That isn't cruel, or at all in keeping with Nazi methodologies. It's compassion.

[Anonymous]

Anonymous wrote:^^^^^^^^^^^^^^sigh.

we have already established that the family wants to get a family or friend, ADULT, a LIVING donor to donate. So there is no poor, normal, more "worthwhile" child who will be passed over because said family or friend wouldn't be donating to them. So no, no other kid would die while this little worthless "retarded" child got her kidney.

Sigh....

They don't have a match. They haven't even started to find a match. If they find a qualifying family member, they will get the transplant. You think the whole story is in one blog post, but it's not.

[Anonymous]

OK, I am very late to the party on this thread, but one thing I have not yet seen mentioned (although I skipped a few pages in the middle because I couldn't read more eugenics debate) is that some of the media reports suggest that the intellectual disabilities were mentioned because the anti-rejection drugs can cause seizures and brain damage.

Here is my take.

She should not get a kdiney through a non-directed living donation or a cadaver kidney through the waitlist. This has nothing to do with whether she deserves it or not and everything to do with the anti-rejection drug risk. I think the hospital is within its rights there to say this is too risky and we can't/won't use limited resources to take such a risk. Also, from the donor perspective, that would be a tough non-directed donation given the very real risk that the anti-rejection drugs will signficantly harm her. I think if the parents and other family members want to donate to her, knowing these risks, that is their call and the docs should live with it. It is their risk to run, I think.


The tougher question is what happens if no family member is a match but they are willing to go into a paired kidney exchange. That's a hard one, but I would probably come down on the side of the parents having the right to control it then, too. Everybody in an exchange (except for non-directed donors) knows the deal they are making and it is an eyes wide open kind of choice.