Eugenics is bad. We all get that.

How do you put this girl on the list, knowing another child is probably going to die as a result? If she lives to adulthood it will be a miracle.

Those who say this is not about eugenics are so mistaken, it's frightening. I'm so grateful to the PPs who have correctly cited the nature of the eugenics movement, and I just want to add a couple more points:

Eugenics was a widely embraced and celebrated intellectual movement in our own country for the greater part of the first half of this century. Compulsive sterilization laws were upheld by the Supreme Court (Buck v. Bell, "three generations of imbeciles is enough"), Planned Parenthood was founded as a eugenics organization, and the eugenics cause was split into "positive" and "negative" methods: "positive" eugenics encouraged reproduction from the fit, and "negative" eugenics discouraged reproduction from the unfit, AS WELL AS limiting assistance or support to the poor, the underclass, the less intelligent, and the physically/mentally disabled.

After WWII, the movement quieted down a little, due to the "excesses" of the war, but it did not go away. Compulsive sterilizations continued all across our country for many years. But reproduction was not the only area of influence, though reproductive technology assisted eugenics decisions: about 90% of Down Syndrome babies are aborted, the assumption is that when spina bifida is detected, abortion is the solution, and PDG is becoming more widespread. Eugenics is a mentality that every human being is NOT deserving of equal respect and care.

That is what is at work here. I'm certain the PR department of the hospital went into spin overdrive to cover their doctors' words, but intellectual disability coming into the calculation about quality of life prognosis? Absolutely, that's an issue.

I remember when I was a little girl in Indiana, a couple who gave birth to a Down syndrome baby decided to withhold medical care. Other families begged to adopt the baby, who needed a simple corrective surgery in order to be able to eat. The parents refused, and were backed up by the Supreme Court of Indiana. The baby starved to death after seven days. Look up "Baby Doe" from Bloomington, IN.

My heart breaks for this family. I can't know all the facts, but just the implication that their little one's life is not worth as much is a terrible burden.

interesting. I have a friend whose son was born with severe mental retardation, in addition to a kidney disorder. My friend decided not to pursue a transplant for him, and he died around age 2. Her rationale was that she couldn't see denying an organ to a another person for the sake of her son, who would never walk or speak. I thought it very admirable of her to recognize that some people WILL contribute more to society than others (like her son) and to stand down in spite of her own grief.

As for whether the child should be allowed to receive a transplant from a living family member, I agree with PP that there must be other issues at play. Either the child is a poor surgery risk, or the family is being denied pro bono care.

I'm interested to hear from the family's defenders: How would YOU allocate a scare resource, such as donor organs? Strict first-come, first-served? Does that include drug users whose actions led to their illness? How about criminals in jail? Let's leave those two categories out: only "blameless" candidates allowed. There still aren't enough organs. What's the next criteria? I guarantee you someone will take issue with any method you devise, but I am ok with letting nature take its course in the case of this child who has probably already lived longer than she would have without the care she's already received.

Anonymous wrote:

Anonymous wrote:Yes

Whatever asshole.

Why is someone an "asshole" for thinking the mother's account is not entirely accurate. Did you not read how she described her own mental state during this meeting?

He says about three more sentences when something sparks in my brain. First it is hazy, foggy, like I am swimming under water. I actually shake my head a little to clear it. And then my brain focuses on what he just said.

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?”

The tears. Oh, the damn tears. Where did they come from? Niagara Falls. All at once. There was no warning. I couldn’t stop them. There were no tissues in conference room so I use my sleeve and my hands and I keep wiping telling myself to stop it.

If we want to have a debate on organ transplant criteria, I think that's healthy. If this is just an exercise in picking sides based on who we like, I think it is a worthless activity.

If there is anyone to be mad at, it is the public at large. The reason that transplant committees have to make these choices is because you and I haven't checked our organ donor options on our driver's licenses. This is a great day to take a look at yours and if you haven't gotten around to it, take your passion and get this corrected. Or sign up for a registry like this one: http://marrow.org/Registry_Members/Donation/Donation_FAQs.aspx There is a 0.2% chance that you will save a person's life. That's pretty cool.

FWIW I feel that a Down Syndrome patient, who has a shorter but reasonable life expectancy, should be a candidate. But I think it is very difficult to pass over another patient to give an organ to a girl who has very low odds of seeing her 21st birthday. Because for every child like this and every upset mother, there is another child and mother in another hospital filling out the same paperwork. They share the same fears, the same pain, the same hopes and dreams for their future. And only one of them is going to get that matched kidney.

Yes. The child is not capable of comprehending the reasons behind the very real pain and suffering it will feel. In addition, the procedure is a risky one for both parties. With multiple comorbities, the doctors may not be willing to take that risk.

Anonymous wrote:yes, she should be denied an unrelated transplant from the organ donation matching system. i am betting that the hospital "denying" her a familial live donation has much more to do with her as a surgical risk than anything else; i think she is probably a poor candidate to undergo the surgery/anesthesia/post-operative course with immunosuppressiive meds/etc and the parents are hung up on the part that she couldn't get on the national list, so are getting media attention for that.

I am also wondering if the financial cost was not part of the decision making process. Did the insurance company also deny coverage?. Is there insurance? Will the hospital pick up the tab? Did doctors refuse to donate their time because of the unlikelihood of success? When making these life and dead decisions, do the panel also consider the receipient's ability to pay it forward to the community? I don't know the answers to these questions, but I wonder if any of them were factors.

Anonymous wrote:Yes

Whatever asshole.

Anonymous wrote:The hospital denies that diminished intellect is used by their transplant committee. Mayer the mothers account is not accurate.

Maybe, but maybe it is. Just because the PR dept at the hospital now says this does not mean that the mom didn't get told exactly what she says she was told. Always there is this "blame the parent" thing that happens when a mom or dad with a child with a disability advocate for them. I think, quite frankly, that it's all just part and parcel of the discrimination that disabled people feel.

One way or another the hospital should have been and should be in the future much more careful how they communicate with parents their decisions about these matters.

Yes

The hospital denies that diminished intellect is used by their transplant committee. Mayer the mothers account is not accurate.

http://www.ama-assn.org/resources/doc/code-medical-ethics/216a.pdf

From what I get from these AMA guidelines, a person with an intellectual disability should not be excluded.

However a person with a limited lifespan may be excluded.

I think this discussion is focused on the wrong aspect of this girl's disease.

Anonymous wrote:Calling this eugenics is unfair. Organs have always been allocated on the basis of projected lifespan. She has wolf-hirschhorn, and the support site claims only that there are "several" living adults with it that is not encouraging This is why a 90 year old wont get that transplant either What else can be done when organs are in short supply?

If the family finds a match in a family member they will probably get a transplant as long as the donor is a consenting adult despite what the mother reported. But they probably don't have a match.

I disagree that it is unfair to call this eugenics. The doctor who spoke to the mother cited her intellectual disability as the reason she was being denied the transplant, even from a living family member. If that is what the doctor said, that is appalling. The hospital should not be making decisions about transplants based on perceived quality of life issues associated with cognitive disabilities. There could be reasonable medical reasons to deny someone with very fragile health a transplant, but to say, "she is mentally retarded and because of the way that impairs her quality of life she should not receive a transplant," is wrong!

Let's say, for the sake of argument, that she would survive the surgery and live for a number of years in reasonably good health, but as a person with a severe cognitive disability. Are there still people on here who think that just on the basis of her quality of life due to her cognitive delay she should not be allowed to receive a kidney from a willing family member or friend?

This would not be happening if they were rich.

Calling this eugenics is unfair. Organs have always been allocated on the basis of projected lifespan. She has wolf-hirschhorn, and the support site claims only that there are "several" living adults with it that is not encouraging This is why a 90 year old wont get that transplant either What else can be done when organs are in short supply?

If the family finds a match in a family member they will probably get a transplant as long as the donor is a consenting adult despite what the mother reported. But they probably don't have a match.

Whatever proportions these crimes finally assumed, it became evident to all who investigated them that they had started from small beginnings. The beginnings at first were merely a subtle shift in emphasis in the basic attitude of the physicians. It started with the acceptance of the attitude, basic in the euthanasia movement, that there is such a thing as life not worthy to be lived. This attitude in its early stages concerned itself merely with the severely and chronically sick. Gradually the sphere of those to be included in this category was enlarged to encompass the socially unproductive, the ideologically unwanted and finally all non-Germans. But it is important to realize that the infinitely small wedge-in lever from which that entire trend of mind received its impetus was the attitude toward the nonrehabilitable sick.


-- Leo Alexander, American psychiatrist, neurologist and key medical advisor at The Nuremberg Trials. Dr. Alexander wrote part of the Nuremberg Code which provides legal and ethical principles for scientific experiments on humans.