Doctor playing Eugenics
 

http://healthland.time.com/2012/01/1...me-one-doctor/

The parents of a 3-year-old New Jersey girl who claim she’s being denied a kidney transplant because of her mental disabilities said their problems may be with one doctor, and not The Children’s Hospital of Philadelphia.

“It’s one doctor who’s never seen us who is making this call,” Joe Rivera told The Associated Press on Wednesday. “We’ve had a great experience with CHOP. We’re not against CHOP, but maybe something needs to be changed. One guy tarnished their reputation.”

Rivera, 39, and his wife Chrissy plan to meet with hospital officials next week, amid a growing online furor that has experts warning the situation may be much more complex than many realize. The hospital has not commented on the child’s case, citing patient confidentiality laws, but acknowledged the online discussion and said on its Facebook page that “we hear your concerns.”

Chrissy Rivera posted a blog entry last week that described an encounter she claimed happened at The Children’s Hospital. She and her husband were there to discuss treatment for her daughter, Amelia, who was born with Wolf-Hirschhorn syndrome, a rare genetic defect that can cause physical and mental disabilities. Amelia will need a transplant in six months to a year.

Chrissy Rivera, 36, wrote that a doctor, whom she did not name, told her and her husband that Amelia wouldn’t be eligible for a transplant because of her quality of life and her mental condition.

“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?’” she wrote. “I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.”

Joe Rivera said he was left thunderstruck.

“It just felt like that you were punched in the gut,” he told the AP. “It was mind blowing how people think these days.”

But he said that the experience was not necessarily indicative of the treatment they’ve gotten from the hospital.

Re: Doctor playing Eugenics
 

It is very tragic the young girl is suffering from Wolf-Hirschhorn Syndrome, however, there is more to why she was denied a kidney transplant than mental retardation. WHS frequently involves "grand-mal" seizures that are quite difficult to treat with pharmaceutical intervention. In addition, the immune system quite weakened, congential heart disease, physical malformations and neurological abnormalities that can result in a wide variety of impairments from mental retardation to death. I don't know why the parents are focusing exclusively on mental retardation when it's clear that the doctor stated, "... quality of life and mental retardation". Later in the article, the parents become very defensive about the doctor commenting on their daughter's quality of life as though it were an insult when in fact it is not.

Due to the daughter's genetic disorder, she will need more resources in the future, such as heart transplant. Unfortunately, studies indicate individuals with this genetic disorder do not have a long life expectancy and given her mental retardation, immunosuppressant medication (for organ transplant), I question how much she can learn from the world. She's going to need more resources and child organs are in short supply. For example, according to an epidemiological study by Shannon, Maltby, Rigby and Quarrell (2001), there is a high morality rate in the first 2 years of life. The girl is three years old, so although she has overcome the 2 year mark, there are very few who survive past 10 years old let alone 20 years old. I understand the doctor's decision and support it because the child will need additional resources that are not in abundance.
http://www.ncbi.nlm.nih.gov/pmc/arti...v038p00674.pdf

Re: Doctor playing Eugenics
 

Re: Doctor playing Eugenics
 

Irrespective of the concerns regarding quality of life, which may have merit (although I would argue we know far too little about her actual prognosis to comment), the notion that her mental condition should even have been considered as a criterion for transplant is beyond the pale. That should not even enter into the equation, frankly, and on that basis I'm not surprised they reacted as they did. On that basis, I find myself questioning why the doctor raised it in the first place and it does leave a fair amount of explaining to be done.

Re: Doctor playing Eugenics
 

Individuals with Wolf-Hirschhorn Syndrome often have a significantly reduced head size, which no doubt causes neural impairment. As a result, various physiological impairments can occur, such as affecting the cardiac system and intellect causing mental retardation. Thus, her mental condition is a product of her physiological disorder. I will say the doctor commented quite a fair bit on her mental condition as though it stemmed from a separate etiology. I cant explain why he/she did that, I think if it were explained in a similar manner that I provided in this post by explaining her neurological symptoms and likely cardiovascular impairments will result in more resource investment, which unfortunately has to be conserved for those who can benefit the most, the parents may be more understand but still distraught. In all fairness though, her mental retardation is not nearly as detrimental as the physiological impairments that commonly occur from this disorder that prove to be fatal, so I do think the focus in the doctor's response was not properly oriented.

Re: Doctor playing Eugenics
 

Re: Doctor playing Eugenics
 

Re: Doctor playing Eugenics
 

Re: Doctor playing Eugenics
 

Re: Doctor playing Eugenics
 

Agreed - I take no issue with the quality of life argument (my only remark on it being that there isn't enough information to comment either way). I'm just baffled as to why mental condition was deemed a criterion at all, given that as you say it's the physiological conditions which are more significant. It just smacks of ulterior motive somewhat, and that is cause for concern. It may well have been an honest error of judgement - doctors are human, after all - but as things stand it doesn't look the best.

Re: Doctor playing Eugenics
 

If I throw a rock in the air, there is a 99.9999% chance it will come back to Earth, unless I one morning wake up to be superman, and throw the rock into orbit instead. Yes, life is based on assumptions of the future, otherwise how the hell can we make any rational choices? We evaluate the possible outcomes of different options the best that we can, and make a choice. One girl has a very high chance of dying prematurely, whereas another might not.

In your example, both kids stand an almost equal chance of being hit by a car the next day. It's a null point. It cancels itself out, whether it be car accident, meteor strike, tsunami, or spontaneous combustion.

I don't even know where or how to start arguing that. It appears you have a pessimistic outlook on life, fine, so do I to a large extent... but ultimately life is whatever you make of it. Suggesting that people would have better lives if they died early... is just ridiculous. Why don't we all kill ourselves at birth to spare ourselves the pain? I'm not even religious or anything, but Jesus Christ...

Again this is a null point, it goes both ways and so cancels out. Either of the kids could turn out to be anything, it purely depends on their upbringing, and to some extent genetics, but the genetics business is a grey area regarding whether or not someone will be "good" or "bad".


I don't like being as rude as I probably sound here, but none of your reasoning makes any sense. I found it difficult to even take your post seriously enough to even bother phrasing my own arguments coherently, so I'm sorry if I don't come across clearly. To be honest I face-palmed at some of the things I read in your post.

Re: Doctor playing Eugenics
 

Re: Doctor playing Eugenics
 

I can understand why the mental condition would be included for other disorders, such as Lesch-Nyhan Syndrome where one of the common symptoms is cognitive impairment that results in frequent and severe self-mutilation to any part of their body, even if they do not have a mood disorder. However, for the girl in question, I understand the doctor's position if there was evidence she harmed her body and internal organs. If there was no such evidence, then I lean more toward the side of an ulterior motive because it's one thing to emphasize her mental condition in only part of the response but to mention in throughout suggests there is a reason that is kept hidden.

The decision panel usually is composed of medical doctors so their decisions and assumptions focus is physiological and medical. If they were to nitpick over potential risks, such as death by a natural disaster, drunk driver, suicide, and every single other possible risk known to human kind, they would get nowhere. Hell, even if there was no decision panel and it was on a first-come first-serve basis, your nitpicking would still leave people thinking they didn't benefit at all from the organ transplant, after all, when their parents are driving them home on the high-way, a kangaroo could hop in the middle of the highway causing them to serve to avoid collision, resulting in the car going airborne and land in the middle of a gun fight between rival gangs.

You're a hypocrite. You accused BDF of making unfounded assumptions yet you just made one of your own. For all you know, the girl may feel her life is hopeless and cannot see any positive light but you suggested this is less likely to occur based on your assumption. I'm sure individuals of all ages who are facing terminal illnesses would love to hear your warped view when you state they should be happy because their life is coming to a very quick and abrupt end.

True, the child could do something amazing, however, that is when it is important to look at their symptoms, disorder, medical history, etc... . The fact she is mentally retarded rules out the possibility of her making a landmark discovery. She could still make a positive difference but this is equivalent to saying the world is such a dangerous place, people can die by any means so they should stay indoors and away from all dangers. Same premise: everything is possible. You're being overly optimistic.

I don't think there's a single doctor, let alone any human being who wouldn't wish there was a large enough supply of organs so donations were on a first-come, first-serve basis. However, since the supply is heavily restricted, there are two options: first-come first-serve or use a decision panel. You supported a decision panel when you wrote a liver should not be donated to someone with an alcohol addiction because they will not benefit as much and would in all likelihood need another liver transplant down the road unless they overcome their addiction. The fact you give support to using a decision panel tarnishes any argument you have against it.

Re: Doctor playing Eugenics
 

Please keep Nazi Idology to yourself and not this topic.

Re: Doctor playing Eugenics
 

Re: Doctor playing Eugenics
 

Re: Doctor playing Eugenics
 

Ladies and gentlemen, I give you Godwin's Law in action...

Re: Doctor playing Eugenics
 

Re: Doctor playing Eugenics
 

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Re: Doctor playing Eugenics
 

Whenever I get close to almost missing the guy he shows up again, says something wildly offensive and runs off without even a "hello".

:/

If TheBabyEater's post was Neo-Nazi then hand me a flag with a Swastika on it.

- Justin