Should 3 year old be denied transplant due to mental disability?

**hypno** · 01-18-2012, 07:21 AM

Personally I found this to be very disturbing. C.H.o.P. should be ashamed of themselves.

(CBS) Three-year-old Amelia Rivera desperately needs a kidney transplant to live. But Amelia's mom, Chrissy, says the Children's Hospital of Philadelphia won't let her daughter get a transplant because she is "mentally retarded."

Amelia was born with Wolf-Hirschhorn syndrome, a genetic condition that affects about one in 50,000 children. The syndrome is characterized by a distinct facial appearance - including a high forehead and broad nose - delayed growth and development, intellectual disability, and seizures.

During a regular appointment with Amelia's nephrologists, Chrissy Rivera was referred to a transplant team to discuss the kidney transplant Amelia would likely need within the year to survive, Rivera wrote on a blog on a Wolf-Hirschhorn support website.

That's when Rivera reportedly met with a doctor and a social worker who told her that Amelia should not have the transplant done because she is "mentally retarded" and would not be able to get on a transplant waiting list. When Rivera said someone in her large family would donate the kidney - thus bypassing the transplant list - the doctor allegedly said Amelia still would not be eligible because of her mental delays and quality of life.

"We were told many times throughout the meeting that she cannot have the transplant because she's considered mentally retarded," Rivera told CBS Philadelphia. The hospital also told Rivera that some of the transplant medications would interfere with Amelia's anti-seizure medications, and she might need another transplant later in life.

"I said, so you're saying in six months to a year when her kidneys fail you want us to let her die? And he said yes," Rivera told CBS Philadelphia.
That's when an outraged Chrissy went home and decided to write the blog, which has since gone viral. A petition on change.org that demands that the hospital reconsider its position has already gotten more than 21,000 signatures.

What does the hospital have to say? "We feel and understand your frustration, but we are unable to comment publicly on individual cases," The Children's Hospital of Philadelphia said in a statement on its Facebook page. "The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities."

CBS Philadelphia reports the hospital has another meeting with the family on Tuesday.

What's the official policy on transplants for all people with disabilities? Turns out, there isn't one.

United Network for Organ Sharing (UNOS), told CBS Philadelphia that it's up to the individual hospitals and their doctors to determine if someone is an appropriate candidate for transplantation.

The Washington Post reports transplant centers' policies on considering transplants for people with intellectual delays are "all over the map." About 39 percent of programs across the country "rarely" or "never" factor intellectual disabilities into transplant decisions, while 43 percent "always" or "usually" take intellectual disabilities into account, according to the paper.

Dr. Arthur Caplan, professor of medical ethics and health policy at the University of Pennsylvania, wrote in a commentary on MSNBC that morally, this is a sticky issue.

"Those being considered for a transplant must be able to comply with what is required after a transplant - taking a lot of medicines and watching out for early signs of rejection of the transplanted kidney," Caplan wrote. "This means that those with severe mental impairment need willing, round-the-clock helpers so that the transplant has a reasonable chance of succeeding."

Caplan said some mental disabilities are linked to genetic problems that could affect other organs and shorten lifespan. Because of that, he said, transplant programs sometimes won't operate on patients who face a shortened lifespan, when there is such a huge need for transplants among other children.

"There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant," Caplan said. "But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases."

**GeorgeForemanRules** · 01-18-2012, 02:28 PM

If the family is paying out of pocket and a kidney is being donated by a family member then hell yes the retard should get the transplant. But if it is being payed by the tax payers and the kidney is not coming from a family member it is clear that the retard should not get the transplant.

**vancouver** · 01-18-2012, 02:44 PM

In all cases the child should get the transplant, assuming there is a chance of success. If the transplant later fails, he/she would go on the back of the list. Denying the transplant sets a precedent that could be used against you or I in the future. Exceptions should not be made when it's a matter of public trust, the risk is too high for society, whether a person is a perfect candidate or not.

**Gissurjon** · 01-18-2012, 03:23 PM

Originally Posted by vancouver

In all cases the child should get the transplant, assuming there is a chance of success. If the transplant later fails, he/she would go on the back of the list. Denying the transplant sets a precedent that could be used against you or I in the future. Exceptions should not be made when it's a matter of public trust, the risk is too high for society, whether a person is a perfect candidate or not.

You forget you are speaking to mostly Americans here and they tend to not give a sh** about anyone but themselves...

**Curt James** · 01-18-2012, 05:43 PM

Originally Posted by hypno

(snip) Caplan said some mental disabilities are linked to genetic problems that could affect other organs and shorten lifespan. Because of that, he said, transplant programs sometimes won't operate on patients who face a shortened lifespan, when there is such a huge need for transplants among other children.

A nurse or doctor may have dropped the ball on political correctness however if you have ten children and one kidney they should choose the child with the greatest likelihood of a successful result. And success should consider or include the odds of a normal lifespan, imo.

Awful analogy, but would you put a new tire on a totaled car?

If it was my family member, of course? But I'm not a physician faced with a limited number of organs for an overwhelming number of patients.

Originally Posted by Gissurjon

You forget you are speaking to mostly Americans here and they tend to not give a sh** about anyone but themselves...

These Americans are apparently medical personnel distributing organs as reasonably as possible. They must give a tiny **** at least about using finite resources in a fair manner.

**Little Wing** · 01-18-2012, 05:59 PM

like it or not there are not enough to go around and this is the right decision.

R. Alta Charo, a professor of medical ethics at University of Wisconsin, said CHOP's statement suggested their decision was not based solely on Mia's disability but "in compliance with with current norms."

**KILLEROFSAINTS** · 01-18-2012, 06:10 PM

doctors thought my son might not ever read or write talk or even walk straight....hes proved us all wrong... that being said you have to with most likely to succeed in these cases....its not fair..but that is life

**vancouver** · 01-18-2012, 06:24 PM

Originally Posted by Gissurjon

You forget you are speaking to mostly Americans here and they tend to not give a sh** about anyone but themselves...

Not true, I know 1 American who isn't that way; that's 0.000000003% of the population

**KelJu** · 01-18-2012, 06:44 PM

Originally Posted by vancouver

In all cases the child should get the transplant, assuming there is a chance of success. If the transplant later fails, he/she would go on the back of the list. Denying the transplant sets a precedent that could be used against you or I in the future. Exceptions should not be made when it's a matter of public trust, the risk is too high for society, whether a person is a perfect candidate or not.

In the land of flying unicorns and friendly talking dinosaurs, this logic might work, but it doesn't work out so well in reality. First off, transplants cost more than most human beings make in a lifetime. If the parents can't shoulder 100% of the financial burden of saving a retard, then it isn't fair to the rest of humanity who are capable of living a full and productive life, but lack the means to do so. There are people who could do great things if given a financial leg up. A $50 investment into a piece of farm equipment or equipment to make irrigation could change the lives of an entire village. Divide $50 by a few hundred thousand dollars, and you start to get an idea of cost/benefit. A retard will never contribute anything to anyone other than to the people who feel obligated to them: the parents.

Secondly, this does not set any precedent. It has been policy for decades to decide who is worthy of organ transplants due to the financial cost and the scarcity of donor organs. Go look up some of the medical documentation for meld and peld scores. Also, there are policies for artificial organs such as knee, hip, and elbow replacements. Similar systems are involved when making a decision for if and when a patient is eligible.

Thirdly, most hospitals are subsidized by the federal and state governments. Even if the parents pay all out of pocket without insurance, they are still using a massive amount of public resources.

In all reality, my cat is similar to a retard. He is completely dependent on me, isn't very bright, and will never produce anything but shit in the litter box. But he makes me happy, just like a retard makes their parents happy. I don't think too many people would like having to pay into a system just to save Otis from terminal liver cancer.

**Little Wing** · 01-18-2012, 06:49 PM

the doctors also have to consider the risk to the donor in a case of live donor and weigh the risk to outcome. i'm sure much more was considered than her mental impairment and this is sensationalized fucktard reporting at it's best.

**Chubby** · 01-18-2012, 06:51 PM

**vancouver** · 01-18-2012, 07:23 PM

Originally Posted by KelJu

In the land of flying unicorns and friendly talking dinosaurs, this logic might work,

Now don't talk about Canada like that, even though it's mainly true

Originally Posted by KelJu

but it doesn't work out so well in reality. First off, transplants cost more than most human beings make in a lifetime. If the parents can't shoulder 100% of the financial burden of saving a retard, then it isn't fair to the rest of humanity who are capable of living a full and productive life, but lack the means to do so. There are people who could do great things if given a financial leg up. A $50 investment into a piece of farm equipment or equipment to make irrigation could change the lives of an entire village. Divide $50 by a few hundred thousand dollars, and you start to get an idea of cost/benefit. A retard will never contribute anything to anyone other than to the people who feel obligated to them: the parents.

Secondly, this does not set any precedent. It has been policy for decades to decide who is worthy of organ transplants due to the financial cost and the scarcity of donor organs. Go look up some of the medical documentation for meld and peld scores. Also, there are policies for artificial organs such as knee, hip, and elbow replacements. Similar systems are involved when making a decision for if and when a patient is eligible.

Thirdly, most hospitals are subsidized by the federal and state governments. Even if the parents pay all out of pocket without insurance, they are still using a massive amount of public resources.

In all reality, my cat is similar to a retard. He is completely dependent on me, isn't very bright, and will never produce anything but shit in the litter box. But he makes me happy, just like a retard makes their parents happy. I don't think too many people would like having to pay into a system just to save Otis from terminal liver cancer.

There is a reason why I said "assuming there is a chance of success". It sounds like in this case there is a willing doner and I'm not aware of their financial burden if any. All else being equal, if this child is simply being discriminated against, it could very well happen to you or me. As soon as you let the door open a crack, it will open the rest of the way on its own.

I'm very fiscally conservative and libertarian, but when it comes to human rights (not animal rights), there is a fine line we need to be careful of.

If it were my child, I would spare no expense. I have 4 children, so clearly I'm speaking from a selfish and biased point of view, as any parent should.

You don't have to argue that this is the right decision if there was a very low chance of a positive outcome, but I don't see that in this case, despite the child being retarded...

Saying that money could be better spent in this case is like saying the middle class don't deserve to spend their money on things the 1% have. People have the right to spend their money how they choose...

**KelJu** · 01-18-2012, 07:56 PM

Originally Posted by vancouver

People have the right to spend their money how they choose...

That is a complicated statement. An individual should have the right to spend his or her money how they choose. An individual should not have the right to spend "other people's money" as if it were their own anyway they choose.

The healthcare system belongs to everyone. Almost no one I talk to has any fucking clue how the healthcare systems of America are funded, yet everyone has a strong opinion. In the US, when you go to an hospital or clinic, you are not paying money for services, you are supplementing the cost of something that is already being paid for by other people. I don't how it works in Canada, because it wasn't my business to know, but in the US, almost everyone with a job pays for that retard.

**charley** · 01-18-2012, 09:51 PM

America doesn't take care of its old people or children.......instead....lets help some really rich people enjoy their time here in the USA.....lets make the mega rich happy...when they need a body part....cough it up.....some poor kid.....f*ck'em......

**vancouver** · 01-18-2012, 10:26 PM

Originally Posted by KelJu

That is a complicated statement. An individual should have the right to spend his or her money how they choose. An individual should not have the right to spend "other people's money" as if it were their own anyway they choose.

Yes, I'm not a fan of spending other peoples money, but all else being equal, spend it how you want. How many good doctors are taken away from the primary healthcare system to do plastic surgery? Pay them to put kidney's into retards if that kidney is not being taken away from someone else.

Originally Posted by KelJu

The healthcare system belongs to everyone. Almost no one I talk to has any fucking clue how the healthcare systems of America are funded, yet everyone has a strong opinion. In the US, when you go to an hospital or clinic, you are not paying money for services, you are supplementing the cost of something that is already being paid for by other people. I don't how it works in Canada, because it wasn't my business to know, but in the US, almost everyone with a job pays for that retard.

I understand it pretty well. I was involved in a business a few years back that required I understand a great deal about healthcare systems, Beveridge, Bismarckian and hybrids of them. The U.S. system is likely the most fucked up in the western world, Canada is a close second, despite what many may think. Not only do I pay premiums, I also pay a lot of tax. What I get in return is a bed if I become critically ill, medicine is not proactive here, you only benefit if you get really sick and that's not much to look forward to. U.S. medicine is more proactive than Canada, but it's not universal. France is the perfect combination of both, which is why it is often rated the #1 system in the world. It's a classic Bismarckian system and very efficient. I could go on for weeks, but I wont...

Bottom line. If we allow precedents to be set in even the extreme cases, we will be prejudiced in the simplest of cases...especially in a private system. This sort of thing would not be so cut and dry in Europe, countries which have much better healthcare systems; the best ones are private, but they are also universal. Government regulates, HMO's toe the line...

**Dark Geared God** · 01-19-2012, 12:14 AM

Originally Posted by GeorgeForemanRules

If the family is paying out of pocket and a kidney is being donated by a family member then hell yes the retard should get the transplant. But if it is being payed by the tax payers and the kidney is not coming from a family member it is clear that the retard should not get the transplant.

Amen to this mah nigga

**Dark Geared God** · 01-19-2012, 12:17 AM

Originally Posted by Gissurjon

You forget you are speaking to mostly Americans here and they tend to not give a sh** about anyone but themselves...

If you were for it...suppose it was between you family member and the tard and they gave it to the tard and more than likely she would need a new one in a few years

**Dark Geared God** · 01-19-2012, 12:22 AM

Originally Posted by charley

America doesn't take care of its old people or children.......instead....lets help some really rich people enjoy their time here in the USA.....lets make the mega rich happy...when they need a body part....cough it up.....some poor kid.....f*ck'em......

I would harvest the tards organs

**bobbyboy** · 01-19-2012, 07:12 AM

That child has no quality of life and never will. The longer they keep the kid alive, the longer they have to suffer. I know it sucks and I deal with shit like this everyday. I
work in pediatrics chronic care. It very sad when they pass but sometimes it really is best.

**Dark Geared God** · 01-19-2012, 08:31 PM

**Gissurjon** · 01-19-2012, 08:46 PM

Originally Posted by Curt James

These Americans are apparently medical personnel distributing organs as reasonably as possible. They must give a tiny **** at least about using finite resources in a fair manner.

Yea of course, but I wasn't referring to the article, I was referring to vanc.'s attempt to appeal to people's "compassionate" side.

**Gissurjon** · 01-19-2012, 08:49 PM

Originally Posted by Dark Geared God

If you were for it...suppose it was between you family member and the tard and they gave it to the tard and more than likely she would need a new one in a few years

I didn't even comment on the article.

...tard

**Dark Geared God** · 01-20-2012, 03:51 PM

Originally Posted by Gissurjon

I didn't even comment on the article.

...tard

we should harvest you

**98dxslpr** · 01-20-2012, 11:03 PM

There is quite a bit of Medical Tourism going on in other countries. Maybe this family should consider going elsewhere for better quality and it will also probably be cheaper for them.

**charley** · 01-21-2012, 11:04 AM

If you ain't got money.....your F*CKED....................

**bandaidwoman** · 01-22-2012, 04:35 PM

The media as usual always screws up medical news. Let me preface by saying that if you have a heart attack, you do better in America, if you need a organ transplant, you fare better in Canada in the long run, because there, they don't go into bankruptcy paying for a lifetime of antirejection medications.

I have been on transplant teams and there is more to the story than what the patient came away with. I'll bet the patient was told lots of things but only remembered the part about her daughter being mentally disabled. ( This happens to me all the time when breaking bad news). The hospital can't say anything because if they do they violate HIPAA and get fined 30 grand for every infraction.

If she has this syndrome, most likely as in the majority of these patients,she suffers from seizures. Many of these seizure medications interact with the antirejection medications, the doctors probably foresaw a lifetime of struggeling to control her seizures that will compromise the medications for both conditions. Should she outlive her parents, despite say medicaid/medicare paying for her meds, what caretaker will take her in? Downs syndrome patients of mine have recieved transplants but they have organizations that take them in should they outlive their parents ( happened to two of mine) but Downs has a well funded advocacy group and good funding and have "housing" for these people with this condition , same with cerebal palsey. This girl has a rare disease, with little to no large organizational funding and safety net, I wonder if they found out her extended family ( aunts etc) were not willing to take her in should her parents die. ( this is a very valid piece of social information that is needed) since you need someone who will carefully monitor and administer her medications for the rest of her life.

**Dark Geared God** · 02-04-2012, 12:21 AM

**Zaphod** · 02-04-2012, 04:07 AM

Originally Posted by charley

If you ain't got money.....your F*CKED....................

The US has the best healthcare in the world. Only if you can afford it.

**XYZ** · 02-22-2012, 12:57 PM

Originally Posted by charley

If you ain't got money.....your F*CKED....................

In the US? How so?

**KILLEROFSAINTS** · 02-22-2012, 01:11 PM

middle class is non existent

you either are very poor...and lie...to get government help

or you actually work,pay taxes and are honest

and you are fucked

insurance is ridiculously expensive on my job...and then there is co pay

my wife is a nurse...insurance is even more expensive thru her job...health care is a joke in the us

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