No transplant for little girl with mental retardation

[Gravekeeper]

It's a fact that mental retardation is listed as a reason for denial of a transplant.

But that aside, that is not what I was referring too with my original statement. You dragged my statement into that realm of discussion. I was referring to wild assumptions being made about what the doctor/hospital has said/done and why.

This is a statement regarding Amelia's case released by the hospital on their Facebook page:

So the hospital has in fact confirmed that there is more to this case than what mom is claiming and also that mental retardation is never used as a sole criteria. So there are other issues at play besides what mom is saying. The qualifier here is whether or not the child is part of an organ waiting listing ( In which case it does become a qualify of life / survival rate/ best option scenario even if it is a difficult decision ).

But mom is saying family members are willing to donate. As its unlikely that there's a similar sized child about to donate ( and that's another ethical dilemma right there anyhow ). That means transplanting an adult organ into a child. Which is certainly possible with a kidney, but difficult as the kidney will need an increased blood supply to survive in her body. Otherwise it will die.

A child's body cannot provide the required amount of blood. She will require at least a year of intravenous and gastric tube fluids for the kidney to survive and that would be if she was healthy and had no heart issues because of her condition. For reference, WHS does cause heart abnormalities as well as underdeveloped muscles. So she'll have tubes in her for over a year with that high risk of severe prolonged seizure and potentially does not have a strong enough cardiovascular system to begin with. On top of that she will need lifelong medication ( medication that increases risk of seizure ) and a new kidney again down the road.

Even just from the surface, there are a ton of possible ( and fatal ) complications and we don't even know what the transplant team knows.

[Ree]

But that aside, that is not what I was referring too with my original statement. You dragged my statement into that realm of discussion. I was referring to wild assumptions being made about what the doctor/hospital has said/done and why.

Ah, but ahead of your comment saying, "We are beginning to make assumptions that are beyond the evidence we have. Need I remind everyone we have nothing except a blog post to go on here," Andara had actually posted a link to something other than this mother's blog that clearly backed up the argument that the transplant was being denied because the girl is mentally retarded, and that transplants are being denied regularly, based on the patients' mental capacity.

The statement from the hospital in this case does seem to indicate that the mental retardation alone is not the reason for denial, but it can also be interpreted as the hospital just covering their butt or spinning it to ward off bad press.

Unless they release the actual files, etc. to the public, we have no way of actually knowing what is the truth, and because of patient confidentiality, I can't see that happening.

What I would like to know is, have other mentally challenged patients been denied transplants at this same hospital, or alternately, have transplants been performed on mentally challenged patients at this same hospital?

That, to me, would certainly help me make a much better informed decision in this case, and on the issue of transplants being denied to the mentally retarded on principle.

[Andara Bledin]

Unless they release the actual files, etc. to the public, we have no way of actually knowing what is the truth, and because of patient confidentiality, I can't see that happening.

In fact, even if the patient agrees to allow the information to be released, the hospital can still choose to use "patient confidentiality" as a shield to hide any evidence of their own wrongdoing, as outlined in the case from my first link in my last post.

The second link outlines how there's an issue of medical facilities still using mental retardation as their primary criteria and then giving other possible negative considerations more weight than they should have to support the denial due to mental retardation.

^-.-^

[Canarr]

But mom is saying family members are willing to donate. As its unlikely that there's a similar sized child about to donate ( and that's another ethical dilemma right there anyhow ). That means transplanting an adult organ into a child. Which is certainly possible with a kidney, but difficult as the kidney will need an increased blood supply to survive in her body. Otherwise it will die.

Personally, I'd see the hospital and the transplant surgeons in a responsibility here, too - if they believe, for whatever reason, that the girl is a poor recipient for a transplant, they should be obligated to refuse even a transplant from a family member.

Family would be too emotional to make a rational decision about whether or not to donate their kidney, so the medical professionals should be the ones to make that call. "But we've got the kidney here, just put it in!" shouldn't be a factor in this.

[Gravekeeper]

Andara had actually posted a link to something other than this mother's blog that clearly backed up the argument that the transplant was being denied because the girl is mentally retarded, and that transplants are being denied regularly, based on the patients' mental capacity.

Andara's 1st link specifically states:

"Now, transplants among people with MR are much more common, although it is not known if some people are still being turned down because of their disability.

“People with disabilities do have access to transplants, but whether we have reached equal access is impossible to say,” according to Reiss."

Andara's 2nd link is unfortunate, but only a single case and seems to have a lot of finger pointing and disputes going on between the hospital and the state over the issue of her ability to consent. But it should be noted that in the only follow up information I could find, another hospital offered to take over her transplant case. However, it does not demonstrate evidence of a wide spread problem.

Andara's 3rd link is about Italy and not relevant to this particular case as a result.

None of these links demonstrate concrete data or evidence that in any way supports a theory on what CHOPS has or has not done here in this case.

What I would like to know is, have other mentally challenged patients been denied transplants at this same hospital, or alternately, have transplants been performed on mentally challenged patients at this same hospital?

No, the statement from the hospital itself said they have never denied a transplant based on mental retardation alone and in fact have performed many such transplants.

[Ree]

Andara's 1st link specifically states:

"Now, transplants among people with MR are much more common, although it is not known if some people are still being turned down because of their disability.

“People with disabilities do have access to transplants, but whether we have reached equal access is impossible to say,” according to Reiss."

And your point? I feel it proves my statement that she was linking to proof that transplants have been denied based on mental capacity. He cannot say without doubt that equal access to transplants exists for mentally challenged people. That still backs up the fact that mental retardation can be a factor for transplant denial.

No, the statement from the hospital itself said they have never denied a transplant based on mental retardation alone and in fact have performed many such transplants.

That's their statement, but I would be much more comfortable with actual figures to back it up.

The fact that "mental retardation" exists on their list of reasons for transplant denial belies that statement, in my opinion.
If, as they state, they don't indeed deny a transplant based on mental retardation alone, then why is it in the list?

[Gravekeeper]

And your point? I feel it proves my statement that she was linking to proof that transplants have been denied based on mental capacity.

My point is none of these links contains any evidence that "clearly backed up" the argument in this particular case. They provide only circumstantial evidence that the scenario has occurred before. Not that the scenario is occurring in this particular case nor that the scenario is occurring on a regular basis. Those are, again, assumptions.

He cannot say without doubt that equal access to transplants exists for mentally challenged people. That still backs up the fact that mental retardation can be a factor for transplant denial.

That acknowledges the possibility, yes, but proves nothing in this particular case. Only that the scenario is possible. To claim that because it has happened before, it is happening here, is making an assumption. Especially now that this entire situation has effectively become her word against theirs.

That's their statement, but I would be much more comfortable with actual figures to back it up.

As would I, yet you're making assumptions without said actual figures.

The fact that "mental retardation" exists on their list of reasons for transplant denial belies that statement, in my opinion.
If, as they state, they don't indeed deny a transplant based on mental retardation alone, then why is it in the list?

I would assume from a medical perspective that it could be a valid quality of life / after care concern when you are being forced to weigh a limited commodity vs such a high demand. The very nature of this situation means doctors are forced to make some pretty difficult decisions. Like it or not, it becomes a numbers game based on the overall chance of long term success. With any such difficult high pressure scenario, yes, a bad decision may be made once and a while, just as it could with any medical scenario.

However, in this particular case, we have an angry mother who is neglecting to or willfully choosing to not disclose all of the details in favour of using emotion as her argument. On the other side, we have the hospital, who is between a rock and a hard place with trying to defend their reputation against the accusation but without breaching patient confidentiality.

It is likely we will never get the full story on this one unless she sues them for malpractice or discrimination, or they sue her for libel. Or both.

[Panacea]

I would think this is a bit of a catch 22.
More research needs to be done, but the fact that transplant organs are hard to come by, and there is a belief that transplanting into the mentally retarded is a potential waste of the organ, then how are more studies to be accomplished?

Every region in the United States falls under a different organ donation system that interlinks with one another to make it national. They can set different rules for transplantation eligibility. Subsequent studies (indeed even the first one done) are made possible by this; clearly there are regions that will do transplants on some patients who have mental retardation at some level.

Other countries also have different rules on the issue. Studies can be conducted in regions that have rules that allow it.

But mom is saying family members are willing to donate. As its unlikely that there's a similar sized child about to donate ( and that's another ethical dilemma right there anyhow ). That means transplanting an adult organ into a child. Which is certainly possible with a kidney, but difficult as the kidney will need an increased blood supply to survive in her body. Otherwise it will die.

Dammit! I completely overlooked this. If the family member donor is a child ethical issues of informed consent come into play. If the potential donor is an adult, it's a moot point. You don't transplant adult organs into children because they don't flipping fit. The organ has to come from a donor close enough in size to make the transplant possible. Livers are an exception because it is the only solid organ that regenerates; you can transplant part of a liver, and this is done all the time. Not so with a kidney.

Unless they release the actual files, etc. to the public, we have no way of actually knowing what is the truth, and because of patient confidentiality, I can't see that happening.

What I would like to know is, have other mentally challenged patients been denied transplants at this same hospital, or alternately, have transplants been performed on mentally challenged patients at this same hospital?

That, to me, would certainly help me make a much better informed decision in this case, and on the issue of transplants being denied to the mentally retarded on principle.

Which the hospital will never do (rightly). Which leaves us with the mother's story and no way to see the other side of the fence.

We actually don't know for sure if the only reason this child is denied a transplant is for the mental retardation (we have only the mother's claim on this), nor do we know if transplants were done on patients with such a mild level of mental retardation they were actually living on their own in the community . . . which I doubt this child ever will do.

Given the issue with the seizures, and the potential for other life threatening problems, I'd say without knowing the entire story it is premature to condemn the hospital.

[Sleepwalker]

Wow. The commenters on that Facebook page are their own worst enemy. Threatening, slandering, conspiracy theorists... and apparently the mom is lapping up all this support. At the moment I'm leaning towards supporting the hospital just because everyone speaking against it is such a histrionic nutjob, it is hard to take their claims seriously. I mean, the mom has a post up about how she scribbled over 'will learn to talk' on an IEP when she herself has cut everyone out of her life who thinks that the kid won't make good progress.

Apparently she is perfectly willing to fly off the handle at people for saying things about her kid that she knows are true, and surrounds herself with ignorant people on purpose.


As for quality of life/mental retardation concerns, is this family paying for this procedure? If the hospital is paying for it, for a few more years of life for a kid that will never speak or control her own limbs, who may very well spend those next few years hooked up to tubes with uncontrollable seizures, at what point is it irresponsible for the hospital to spend those resources, risk that donor's life and health on prolonging the life of this kid?

I mean, shit, since everyone here seems happy to claim that the hospital are monsters, let's turn this around. When does medical intervention become morally dubious, or even immoral? When does a doctor have the right to say no, I'm not going to be involved in this, cutting open a healthy person and taking their organ to turn the next 5 years into a hellcircus of tubes and drugs and seizures and worsening brain damage for a kid completely incapable of communicating with us about what she wants?

Doctors are not machines. You don't just insert money/charity petition and get a result based solely on what YOU want. They are people with a set of responsibilities and ethics concerns. How about considering that for a minute instead of flying off the handle and calling them monsters because someone with high functioning Down's syndrome got their tubes tied 70 years ago.

[Mongo Skruddgemire]

Yes, but the doctor, at least according to the blog, is making it sound like he won't do the operation because the girl is mentally retarded

No, the article is making it sound like the doctor is saying that it is because of the mental retardation.

Subtle difference.

If this was an article by a reputable news agency then I'd be more outraged. But as this is more blog like in tone. It is only the story from the writer's perspective. Meaning that she is free to say what she feels, remembers (correctly or incorrectly) or what she wishes to make up.

Had she posted an image of the documents in question with the highlighted bits, then she would have that much more credibility.

But as it is, we only have the side of the story from a distraught mother. And even if we rule out the retardation you are looking at HIV and Hep C. Since organs are a scarce commodity, they naturally want to put them into people who have the best chance of them lasting the longest.

A child as young as that with those two issues may not be the best candidate for a transplant as they may not be long to live even with the transplant.

We don't know because we don't have the full story. And thanks to HIPPA we may never know the full story because it is not our right to know.

And something that I'd like to know...it is possible for a person to live without functional kidneys for years thanks to Dialysis. There is no mention of whether or not the doctor offered it or not. I would think that considering that home dialysis is now an option it should have been put on the table.

But again we do not know if it was or not because we have only one distraught person's side of the story.

So I am not going to judge. The woman may be correct that this doctor refused because of the child's issues. The doctor may be correct in his decision.

But as I'm not a doctor and do not know the whole story...I can't really bring myself to feel any emotions on the issue one way or the other. Too many missing numbers to crunch the equation.

[Gravekeeper]

Dammit! I completely overlooked this. If the family member donor is a child ethical issues of informed consent come into play. If the potential donor is an adult, it's a moot point. You don't transplant adult organs into children because they don't flipping fit. The organ has to come from a donor close enough in size to make the transplant possible. Livers are an exception because it is the only solid organ that regenerates; you can transplant part of a liver, and this is done all the time. Not so with a kidney.

It *is* possible with a kidney, but like I said the technique requires 1 or more years of basically having a tube in your abdomen and a tube in your arm providing you constantly with enough fluid to support the kidney so it doesn't die. But yes, size is an issue as is the child's cardiovascular health. If she's already too small for the organ ( WHS causes delayed growth ) and already has a weak heart ( Which WHS causes ) and generally a weak system overall ( WHS again ) she's a bad candidate for the technique. Couple that with the fact the lifelong medication she would require would likely give her severe seizures that may cause further neurological damage on top of having to live with tubes in her. Then yes, I can see why the transplant team might say no as a quality of life issue. Such a transplant would doom her to 1 or more years of being hooked up to a machine plus saddle her with lifelong severe seizures that may cause even more brain damage. If she even survived any of it to begin with.

Plus, the technique required was pioneered by a different children's hospital and as such may be the only one that actually performs it regularly. As I could not find any other one that mentioned the technique.

[Panacea]

But as it is, we only have the side of the story from a distraught mother. And even if we rule out the retardation you are looking at HIV and Hep C. Since organs are a scarce commodity, they naturally want to put them into people who have the best chance of them lasting the longest.

And something that I'd like to know...it is possible for a person to live without functional kidneys for years thanks to Dialysis. There is no mention of whether or not the doctor offered it or not. I would think that considering that home dialysis is now an option it should have been put on the table.

IIRC, the mother's blog ruled out Hep C and HIV; the kid doesn't have these diseases.

But certainly dialysis is an option, either peritoneal or hemodialysis.

Hemodialysis sucks though. Some patients get by once a week, others are 3x/week. It makes you feel like shit, because you lose red blood cells, meaning some patients need blood transfusions and/or epo to make new RBCs (side effect being bone pain from the stress on the marrow).

But yeah, this kid could live for a long time with dialysis. She'll probably have to. Mom can blog all she wants, she's not going to get this hospital to back down through a public opinion war. And if legal action were an option, we'd see her lawyer screaming on television by now.

[IDrinkaRum]

Huffington Post article about the situation and the fact the hospital has backed down a bit from their original denial of the transplant

[Canarr]

Then maybe it was actually just a miscommunication; the hospital evaluated the girl for the organ donor list, which she didn't qualify for, while the parents wanted to see what could be done about donating a kidney out of the family.

Still: the girl is three years old? Is there even a relative of hers of that age? And if there is, do they *really* want to subject him or her to life with one kidney at that age?

Now, call me selfish; but if I had a child of three, and my aunt or uncle or cousin came along, asking me to have my child give up one kidney, so their child might live for some time... I'd probably say, "Sorry... but no."

Still, I like the article; Lisa Belkins writes with compassion, understanding, but still a rational head. Although she doesn't mention the problems of live donor organs for children; that struck me as odd.

There is reason for anger here, I agree, but not at the doctors who got into this line of work in order to save lives, and not at the national organ registry that made rules no one really wants to have to make.

The anger should be directed at a system where, of the 12,000 people who died last year and met the criteria to be donors -- 12,000 people whose hearts and lungs and livers and kidneys could have gone on to save many times that number of lives... only half of those potential lifesavers were registered as donors. The rest of the organs went to waste.

So be angry. And then go sign your organ donor card.

[Kheldarson]

I don't think the issues of live donor organs for kids was the point of her article. Her point's right there in what you quoted. She'd rather the list be easier to resolve by having more organs on the system than have the doctors continually make hard choices.