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

[Anonymous]

Putting aside the specific facts of this case, it troubles me to see so many PPs saying it is flatly impossible for doctors to have a bias against intellectual disabilities. This is a demonstrated, entrenched, documented trend among physicians of all specialities. Surveys about withholding treatment from mentally disabled children consistently show a majority of doctors in favor. This bias is prevalent and hard to overcome.

It begins with genetic screening. When negative screening results come back, the presumption is that the parents will terminate. When I was reading reviews of high-risk OBs in this area, I came across countless stories of women who were coarsely told "you will have to terminate" by doctors who refused to discuss options. When people saw my disabled brother at the playground, the first question my mom would be asked was, "You didn't test for that?". When my parents declined termination, they were put under immense pressure by the medical establishment. It's not just my anecdotes, though--again, researchers have uncovered the trend for decades.

So the assumption that doctors are incapable of this kind of bias is false.

Oh, it is certainly possible that some doctors are biased against intellectual disabilities. I would go so far as to say it is likely. However, I think it is somewhat unlikely that the team of doctors who review the decision, the ethics committe of CHOP, the PR people and hospital administration are all biased. Or at least that they are so blatantly biased that they would not be shamed into reversing the decision based on the media response and outpouring or support. Therefore, the fact that CHOP has not reversed the decision despite the parents efforts and public support indicates that there is probably more going on with this child's medical situation that leads them to conclude that she is a poor candidate for the transplant.
I cannot imagine how sad these parents must be and how awful the situation must be for them. Whatever the reason, whether it is legitimate or based on bias, my heart truly goes out to them. If it is actually the case that her intellectual disability was the reason for the denial, I hope that they find another hospital to have the procedure done.

[Anonymous]

Anonymous wrote:

Anonymous wrote:The disabled community stepped up and advocated on behalf of this family. the little girl is now on the transplant list.

And this is not right, she is not on the "transplant list." Nor did her parents ever seek to make that specifically happen. They wanted and still want to use a LIVE FAMILY donor. The hospital wanted to deny them that because the girl is mentally retarded.

The article does not tell the whole story is regards to this.

A child cannot accept an adult kidney, it is too big. The family wanted to use a CHILD DONOR. This is UNETHICAL. No family should make the choice for small child to give away an organ.

from another article, best quote:


"With scarcity, social factors do count, with every transplant,"

Sorry, this is true.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:The disabled community stepped up and advocated on behalf of this family. the little girl is now on the transplant list.

And this is not right, she is not on the "transplant list." Nor did her parents ever seek to make that specifically happen. They wanted and still want to use a LIVE FAMILY donor. The hospital wanted to deny them that because the girl is mentally retarded.

The article does not tell the whole story is regards to this.

A child cannot accept an adult kidney, it is too big. The family wanted to use a CHILD DONOR. This is UNETHICAL. No family should make the choice for small child to give away an organ.

from another article, best quote:


"With scarcity, social factors do count, with every transplant,"

Sorry, this is true.

If you want us to believe this is true, that the parents intend to use a child within their family for the donation, then please link to where you read that. Otherwise that is conjecture on your part. Adult kidneys HAVE been used and ARE used in children.

[Anonymous]

American Association of Kidney Patients says this, By Dwayne Henry, MD, and Vikas R. Dharnidharka, MD:

Living donation is much more common in children than in adults since parents are often available and willing to donate. The transplanted kidney is not placed at the site of the original kidneys but is placed in the lower belly. A child can receive an adult kidney, since by a certain age (usually older than 2 years) there is enough space in the belly to fit the new kidney.

From the National Kidney and Urologic Diseases Clearing House a service of NIDDK at the NIH:

Living donor. Most people can donate a kidney without hurting their health. Many children receive a kidney from one of their parents, but the donor does not have to be a family member.

This comes directly from CHOP's website:

A donor must be between 18 and 60 years of age. Most of the time, the donor is a parent, sibling, aunt or uncle of the child in need of the transplant, but this is not required.

Obviously children can get kidneys donated from adults! Are those saying they can't just pulling that out of their ass? I'm really curious. CHOP is a children's hospital and they won't even do live donations from someone under 18 into a child. So that was never on the table, clearly.

[Anonymous]

http://news.yahoo.com/nj-parents-disabled-girl-denied-transplant-073139239.htmlhttp://news.yahoo.com/nj-parents-disabled-girl-denied-transplant-073139239.html.

The issue the Riveras face is not simple, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.
For example, the blog notes that Rivera told the hospital that "we plan on donating" the kidney, since they come from a large family.
"Most adults can't donate an organ, because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."

However, in recent years some hospitals have pioneered ways to use an adult's kidney in a child.


According to this article, it sounds like the use of adult kidneys in children is not yet standard of care, but rather in the developmental stage. That is also the impression I got from the Stanford page someone posted earlier.

[Anonymous]

Another issue with live donors is that it can and often does impact the donor's ability to get health insurance or to get insurance at an affordable rate.

[Anonymous]

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.

[Anonymous]

"You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."

Well, yes, it is, it always is, but I don't know that it is more troubling in this case than any other case where a child would donate a kidney to a sibling, unless it would not significantly prolong and improve Amelia's life.

[Anonymous]

Anonymous wrote:You left out a big, important detail. She has a fatal condition. So, yes, I understand where the hospital is coming from. It's not worth risking someone else's life to give this girl 6months-1 year of poor quality of life. Her parents need to enjoy their time with her and not pursue invasive, temporary solutions.

Wow, you're beyond disgusting. I can only imagine if you faced a similar fate and your family gave up on you so easily.

[Anonymous]

A child can never donate to another person, even if it is a sibling. I am pretty sure that there is no transplant center that would take anyone under the age of 18 as a possible donor. There is too much risk for that donor, and parents cannot consent for it in place of the child. Luckily, if a child needs a liver to save their life, an adult can donate by giving a partial liver graft. However, most kidney patients can be sustained on dialysis for many years (although certainly with a negative impact towards their health and transplant outcome), so that they have to wait for a deceased donor to become available, a very small adult as a living donor, or wait until they get a little larger. In this region, kids get a lot of preference on the list, so they rarely have to wait too long to get a transplant unless they are very hard to match due to antibodies they may have.
So, there is no merit to the debate about getting a child to be a living donor for this sick child. It is not acceptable in our current society, and it would not be allowed at any center. (Although, you never know what someone will try next.)

[Anonymous]

Anonymous wrote:http://news.yahoo.com/nj-parents-disabled-girl-denied-transplant-073139239.htmlhttp://news.yahoo.com/nj-parents-disabled-girl-denied-transplant-073139239.html.

The issue the Riveras face is not simple, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.
For example, the blog notes that Rivera told the hospital that "we plan on donating" the kidney, since they come from a large family.
"Most adults can't donate an organ, because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."

However, in recent years some hospitals have pioneered ways to use an adult's kidney in a child.


According to this article, it sounds like the use of adult kidneys in children is not yet standard of care, but rather in the developmental stage. That is also the impression I got from the Stanford page someone posted earlier.

This guy is talking out of his ass. It sounds like he is completely speculating that they want to use another child as a donor. I would love to see even ONE quote from someone who is actually involved in this situation that says that the parents want to have a CHILD act as a living donor.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:

Anonymous wrote:http://news.yahoo.com/nj-parents-disabled-girl-denied-transplant-073139239.htmlhttp://news.yahoo.com/nj-parents-disabled-girl-denied-transplant-073139239.html.

The issue the Riveras face is not simple, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.
For example, the blog notes that Rivera told the hospital that "we plan on donating" the kidney, since they come from a large family.
"Most adults can't donate an organ, because it won't fit" a child, Caplan said. "You're starting to say you're going to use another child as a living donor, and that's ethically really trouble."

However, in recent years some hospitals have pioneered ways to use an adult's kidney in a child.


According to this article, it sounds like the use of adult kidneys in children is not yet standard of care, but rather in the developmental stage. That is also the impression I got from the Stanford page someone posted earlier.

This guy is talking out of his ass. It sounds like he is completely speculating that they want to use another child as a donor. I would love to see even ONE quote from someone who is actually involved in this situation that says that the parents want to have a CHILD act as a living donor.

EXACTLY! Thank you! Just because this Caplan guy (who is not a nephrologist, nor is he affiliated with CHOP) made these statements means nothing!!!!!!!!!! This family never intended to use a living child as a donor for their little girl. Period! Whatever you may think about whether or not Amelia should get a transplant this should not be part of the discussion because it would never happen.

[Anonymous]

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.

[Anonymous]

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.