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(WTKR)   Disabled baby denied heart transplant, despite family finding evidence he'd survive just fine. Family finds new hospital where doctors simply tweak his meds so he no longer needs transplant   (wtkr.com) divider line 76
    More: Spiffy, heart transplant, baby denied, lung transplant, hospitals, psychiatric medication, New York Presbyterian Hospital, scientific laws, heart defect  
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2013-12-03 09:13:14 AM  
teamshocker.com
 
2013-12-03 09:13:40 AM  
Sometimes you have to hear "no" on the way to finding "yes".

/and all babies are disabled.
 
2013-12-03 09:15:37 AM  
"In the face of such scarcity, doctors try to select the patients most likely to get the longest life, and the highest quality of life, from a new heart. "

I'm sure we can all think of one rather obvious exception to this policy
 
2013-12-03 09:16:04 AM  
what is the command to disable babies?
 
2013-12-03 09:16:12 AM  

itsaidwhat: Sometimes you have to hear "no" on the way to finding "yes".


You're writing a self help book with that title, aren't you?
 
2013-12-03 09:16:40 AM  

Agarista: "In the face of such scarcity, doctors try to select the patients most likely to get the longest life, and the highest quality of life, from a new heart. "

I'm sure we can all think of one rather obvious exception to this policy


Does his name rhyme with Mick Brainy?
 
2013-12-03 09:18:33 AM  

Arkanaut: Agarista: "In the face of such scarcity, doctors try to select the patients most likely to get the longest life, and the highest quality of life, from a new heart. "

I'm sure we can all think of one rather obvious exception to this policy

Does his name rhyme with Mick Brainy?


Get this man a chicken dinner!
 
2013-12-03 09:18:37 AM  
Is his name Pete?
 
2013-12-03 09:18:48 AM  
It's dusty in here.
 
2013-12-03 09:21:21 AM  
Wow, this happened a few days ago, too!
 
2013-12-03 09:22:24 AM  
My id wants to say, "A shame that doctors can't be trusted to cure you," but I'm sure I'm not weighing the whole situation correctly.  How did the Boston doctors discover that altering medication would have these incredible results, and why didn't the other doctors?  Was the child's death so expected that they just gave up on finding alternatives?
 
2013-12-03 09:23:45 AM  

asciibaron: what is the command to disable babies?


"One day, son, you will grow up and vote Republican"
 
2013-12-03 09:24:22 AM  

Agarista: "In the face of such scarcity, doctors try to select the patients most likely to get the longest life, and the highest quality of life, from a new heart. "

I'm sure we can all think of one rather obvious exception to this policy



They're referring to the life of the patient and not the lives of everyone he comes into contact with over the coming decades.
 
2013-12-03 09:24:33 AM  
As someone who's mom is currently waiting for a kidney, I find this sad.

//Soon mom, soon.
 
2013-12-03 09:26:33 AM  

asciibaron: what is the command to disable babies?


while ( !disabled )
{
    shake_the_baby();
}
 
2013-12-03 09:27:18 AM  
Dumb emotional biatch.
 
2013-12-03 09:29:25 AM  

"We have to be stewards of a very valuable resource. We want hearts to go to people who we think will benefit the most from them," said Dr. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.



Bull...
Farking...
Crap.


It's all about the benjamins.

www.depresident.com
 
2013-12-03 09:29:30 AM  

gnosis301: My id wants to say, "A shame that doctors can't be trusted to cure you," but I'm sure I'm not weighing the whole situation correctly.  How did the Boston doctors discover that altering medication would have these incredible results, and why didn't the other doctors?  Was the child's death so expected that they just gave up on finding alternatives?


Well, that hospital in Boston is well-recognized as being exceptional. I know a couple whose first child had to be born there and have surgery right after being born because he was born with a severe heart defect. I think he had more surgeries after that but I'm not sure. Anyway, he is in elementary school now and doing well. He is small for his age but not mentally "delayed" but he doesn't have the condition of the baby in TFA and I'm honestly not sure if he had a transplant or just surgery to fix what was there.
 
2013-12-03 09:31:45 AM  

Maud Dib: "We have to be stewards of a very valuable resource. We want hearts to go to people who we think will benefit the most from them," said Dr. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.

Bull...
Farking...
Crap.


It's all about the benjamins.

[www.depresident.com image 450x321]


Yep. I'm sure the baby will make better use of its heart that Darth Cheney will his.
 
2013-12-03 09:33:00 AM  
Maybe I am heartless, but when I think of the financial resources being used to keep a disabled to such a degree child alive I get angry. Keeping this child alive for even 5-10 years with a terrible quality of life could instead pay for tens or maybe even hundreds of other less financially advantaged children's educations which will give them a much better quality of life.

Sometimes you just have to let mother nature run its course.
 
2013-12-03 09:35:20 AM  

gnosis301: My id wants to say, "A shame that doctors can't be trusted to cure you," but I'm sure I'm not weighing the whole situation correctly.  How did the Boston doctors discover that altering medication would have these incredible results, and why didn't the other doctors?  Was the child's death so expected that they just gave up on finding alternatives?



I'm goping to speculate that the doctor in charge of the babby's case was a surgeon, and as such he was pre-disposed to look for surgical solutions and discount any that didn't involve cutting. Specialists tend towards tunnel vision.

When your only tool is a hammer...
 
2013-12-03 09:36:41 AM  
Hmmm,,, From an NIH summary

Coffin-Siris syndrome appears to follow an autosomal dominant pattern of inheritance, which means one copy of the altered gene in each cell is sufficient to cause the disorder. However, the condition is not usually inherited from an affected parent, but occurs from new (de novo) mutations in the gene that likely occur during early embryonic development.

Might I suggest Heinlein's cure for hemophilia?

Overall, this reinforces the gambit about "They call it medical practice" and the fact the meds could be adjusted to the point where it wasn't a transplant case make me think someone said "transplant" before it was needed. Any which way, I'm not a fan of heroic neonatal heart surgeons. Many fertilized eggs spontaneously abort because they're defective, and the resources spent on a defective embryo prevent the creation of a good one. Same with babies, some aren't fit to survive. But I'm a bit Spartan in my views about wasting resources that could go to improving the lives of the whole society. In this case, if we didn't do infant heart surgeries and transplants that would reduce the costs of medicine across the board and free up money in everyone's pockets. Except the surgeons and hospitals pockets, fark them.
 
2013-12-03 09:38:05 AM  

gnosis301: My id wants to say, "A shame that doctors can't be trusted to cure you," but I'm sure I'm not weighing the whole situation correctly.  How did the Boston doctors discover that altering medication would have these incredible results, and why didn't the other doctors?  Was the child's death so expected that they just gave up on finding alternatives?


10,000 people liked the babies 'like this to fix my heart' status
 
2013-12-03 09:39:33 AM  

cybrwzrd: Maybe I am heartless, but when I think of the financial resources being used to keep a disabled to such a degree child alive I get angry. Keeping this child alive for even 5-10 years with a terrible quality of life could instead pay for tens or maybe even hundreds of other less financially advantaged children's educations which will give them a much better quality of life.

Sometimes you just have to let mother nature run its course.


Eh, why stop there?  Why are we spending ANY resources keeping these disabled people alive?  Go all Jack Kevorkian on them.  Heck, I bet would could identify all sorts of undesirables and do the same with them.
 
2013-12-03 09:41:03 AM  

cybrwzrd: Maybe I am heartless, but when I think of the financial resources being used to keep a disabled to such a degree child alive I get angry. Keeping this child alive for even 5-10 years with a terrible quality of life could instead pay for tens or maybe even hundreds of other less financially advantaged children's educations which will give them a much better quality of life.

Sometimes you just have to let mother nature run its course.


You sound like just the kind of person who should make these decisions for everyone. There's a place in Obama's healthcare beaurocracy for you. A panel, even.
 
2013-12-03 09:42:51 AM  
I admire the chutzpah of this mother. More people need to stand up to these doctors that have a god complex.
I wonder how broke the parents were from all the medical expenses and how much their finances factored into the initial decision to deny the baby a transplant. Silly thoughts, I'm sure.
 
2013-12-03 09:46:52 AM  
Thanks subby: you made me work for that. Too long but did read.

The successful treatment ought to be the story here, along with medicine's rather uncreative and rote method of dealing with issues at times. Wouldn't everyone prefer to be able to treat someone with some drugs rather than a mega-expensive huge risk operation?

It's like this kid showed up and the doctors opened up their toolbox. Gazing inside at all the beautiful and expensive hammers they look back at the patient and then to mom, "He's not a nail. Sorry, can't help you."

Toolboxes should be bigger.
 
2013-12-03 09:48:39 AM  

meanmutton: cybrwzrd: Maybe I am heartless, but when I think of the financial resources being used to keep a disabled to such a degree child alive I get angry. Keeping this child alive for even 5-10 years with a terrible quality of life could instead pay for tens or maybe even hundreds of other less financially advantaged children's educations which will give them a much better quality of life.

Sometimes you just have to let mother nature run its course.

Eh, why stop there?  Why are we spending ANY resources keeping these disabled people alive?  Go all Jack Kevorkian on them.  Heck, I bet would could identify all sorts of undesirables and do the same with them.


If you are disabled to the point of not being able to live on your own without serious intervention, then yes, maybe the cost to society is greater than the value of your life. This child would have died, the parents would have moved on and had another just 100, hell even 50 years ago. Why are they entitled to spend hundreds of thousands if not millions on care when there are others out there where these resources can be better used.
 
2013-12-03 09:49:45 AM  

ashinmytomatoes: Maud Dib: "We have to be stewards of a very valuable resource. We want hearts to go to people who we think will benefit the most from them," said Dr. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.

Bull...
Farking...
Crap.


It's all about the benjamins.

[www.depresident.com image 450x321]

Yep. I'm sure the baby will make better use of its heart that Darth Cheney will his.


Are you liberals under the impression that hearts for adults is the same pool of organs as it is for babies?
 
2013-12-03 09:51:52 AM  

MyRandomName: ashinmytomatoes: Maud Dib: "We have to be stewards of a very valuable resource. We want hearts to go to people who we think will benefit the most from them," said Dr. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.

Bull...
Farking...
Crap.


It's all about the benjamins.

[www.depresident.com image 450x321]

Yep. I'm sure the baby will make better use of its heart that Darth Cheney will his.

Are you liberals under the impression that hearts for adults is the same pool of organs as it is for babies?


No. And I did read TFA and know the baby's issue was corrected without a transplant by the clever doctors at the hospital in Boston. The baby is a better use of any heart, original part or not, than Cheney.
 
2013-12-03 09:52:23 AM  
Obama death panels
 
2013-12-03 09:53:00 AM  

JoieD'Zen: More people need to stand up to these doctors that have a god complex.


What about the people in this thread who have a god complex? They clearly wish to decide who lives and who dies, who is worthy of help and should be thrown away.

If anyone is ever curious as to how Hitler could have staffed his extermination camps, you can see potential volunteers right here among us.

They'll assure you they're wise and just enough to make these decisions.
 
2013-12-03 09:53:53 AM  

JoieD'Zen: I admire the chutzpah of this mother. More people need to stand up to these doctors that have a god complex.
I wonder how broke the parents were from all the medical expenses and how much their finances factored into the initial decision to deny the baby a transplant. Silly thoughts, I'm sure.


I recall a poster on slashdot who submitted that, had he an 11 year old daughter in need of a heart, he would without a second thought murder the next child for it.

There are a limited supply of these things.  The doctors aren't making people die; they're only deciding who dies.  That means standing against their decision involves deciding that someone else must die.

Accepting treatment is murder.
 
2013-12-03 09:54:09 AM  

ashinmytomatoes: MyRandomName: ashinmytomatoes: Maud Dib: "We have to be stewards of a very valuable resource. We want hearts to go to people who we think will benefit the most from them," said Dr. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.

Bull...
Farking...
Crap.


It's all about the benjamins.

[www.depresident.com image 450x321]

Yep. I'm sure the baby will make better use of its heart that Darth Cheney will his.

Are you liberals under the impression that hearts for adults is the same pool of organs as it is for babies?

No. And I did read TFA and know the baby's issue was corrected without a transplant by the clever doctors at the hospital in Boston. The baby is a better use of any heart, original part or not, than Cheney.


So by your last line you do believe babys have the same organ pool as adults. Just want to make sure you are aware of that ignorance.
 
2013-12-03 09:57:51 AM  

dfenstrate: JoieD'Zen: More people need to stand up to these doctors that have a god complex.

What about the people in this thread who have a god complex? They clearly wish to decide who lives and who dies, who is worthy of help and should be thrown away.

If anyone is ever curious as to how Hitler could have staffed his extermination camps, you can see potential volunteers right here among us.

They'll assure you they're wise and just enough to make these decisions.


The parents and doctors here are the ones playing god. I fail to see how letting nature take its course is playing god.
 
2013-12-03 10:09:17 AM  

cybrwzrd: meanmutton: cybrwzrd: Maybe I am heartless, but when I think of the financial resources being used to keep a disabled to such a degree child alive I get angry. Keeping this child alive for even 5-10 years with a terrible quality of life could instead pay for tens or maybe even hundreds of other less financially advantaged children's educations which will give them a much better quality of life.

Sometimes you just have to let mother nature run its course.

Eh, why stop there?  Why are we spending ANY resources keeping these disabled people alive?  Go all Jack Kevorkian on them.  Heck, I bet would could identify all sorts of undesirables and do the same with them.

If you are disabled to the point of not being able to live on your own without serious intervention, then yes, maybe the cost to society is greater than the value of your life. This child would have died, the parents would have moved on and had another just 100, hell even 50 years ago. Why are they entitled to spend hundreds of thousands if not millions on care when there are others out there where these resources can be better used.


www.chronicle.su
 
2013-12-03 10:10:34 AM  
MyRandomName:
So by your last line you do believe babys have the same organ pool as adults. Just want to make sure you are aware of that ignorance.

Why is the default assumption the one that would paint him in the most negative light?  Is it possible he was simply speaking figuratively in order to make a joke?

bluefoxicy:
There are a limited supply of these things.  The doctors aren't making people die; they're only deciding who dies.  That means standing against their decision involves deciding that someone else must die.

This needs to be repeated.  The doctors are not arbitrarily deciding a disabled kid needs to die.  They are trying to allocate a precious resource based on where it will do the most good.

meanmutton:

Eh, why stop there?  Why are we spending ANY resources keeping these disabled people alive?  Go all Jack Kevorkian on them.  Heck, I bet would could identify all sorts of undesirables and do the same with them.

Why eat in moderation?  Gluttony at all times!  Why walk anywhere when you can drive everywhere?!!!  Absolutism is such fun.  You are trying to paint him as heartless(for taking a pragmatic stance on the topic) by using a fallacious argument that does nothing positive for the debate.
 
2013-12-03 10:10:40 AM  
Old repeat news. Original thread here: http://m.fark.com/comments/8039563?from_page=politics
 
2013-12-03 10:17:30 AM  
"I take risks, sometimes patients die. But not taking risks causes more patients to die, so I guess my biggest problem is I've been cursed with the ability to do the math." - House
 
2013-12-03 10:21:27 AM  

dfenstrate: JoieD'Zen: More people need to stand up to these doctors that have a god complex.

What about the people in this thread who have a god complex? They clearly wish to decide who lives and who dies, who is worthy of help and should be thrown away.

If anyone is ever curious as to how Hitler could have staffed his extermination camps, you can see potential volunteers right here among us.

They'll assure you they're wise and just enough to make these decisions.


Yes, not performing a multi-million dollar operation to save someone is exactly the same as marching a couple hundred people out to the woods, forcing them to dig a ditch, and machine gunning them all.
 
2013-12-03 10:22:11 AM  

cybrwzrd: The parents and doctors here are the ones playing god. I fail to see how letting nature take its course is playing god.


Would you, had you the power, stop them from caring for the child, so the money involved might be spent in a way you find better according to criteria you determine?
 
2013-12-03 10:24:12 AM  

Ned Stark: Yes, not performing a multi-million dollar operation to save someone is exactly the same as marching a couple hundred people out to the woods, forcing them to dig a ditch, and machine gunning them all.


Thinking you know how to decide who lives and who dies (when innocent people are on the line) is the first step.
 
2013-12-03 10:24:20 AM  

stevetherobot: cybrwzrd: meanmutton: cybrwzrd: Maybe I am heartless, but when I think of the financial resources being used to keep a disabled to such a degree child alive I get angry. Keeping this child alive for even 5-10 years with a terrible quality of life could instead pay for tens or maybe even hundreds of other less financially advantaged children's educations which will give them a much better quality of life.

Sometimes you just have to let mother nature run its course.

Eh, why stop there?  Why are we spending ANY resources keeping these disabled people alive?  Go all Jack Kevorkian on them.  Heck, I bet would could identify all sorts of undesirables and do the same with them.

If you are disabled to the point of not being able to live on your own without serious intervention, then yes, maybe the cost to society is greater than the value of your life. This child would have died, the parents would have moved on and had another just 100, hell even 50 years ago. Why are they entitled to spend hundreds of thousands if not millions on care when there are others out there where these resources can be better used.

[www.chronicle.su image 850x911]


He is functioning just fine, and also made it past infancy and early childhood without severe mental diabalities and he also contributes to society. This child has severe genetic defects.

From the NIH-

"Most affected individuals have mild to severe intellectual disability or delayed development of speech and motor skills such as sitting and walking. Another feature of Coffin-Siris syndrome is underdevelopment (hypoplasia) of the tips of the fingers or toes, or hypoplasia or absence of the nails. These abnormalities are most common on the fifth fingers or toes. In addition, most affected individuals have facial features described as coarse. These typically include a wide nose with a flat nasal bridge, a wide mouth with thick lips, and thick eyebrows and eyelashes. Affected individuals can have excess hair on other parts of the face and body (hirsutism), but scalp hair is often sparse. There is a range of facial features seen in people with Coffin-Siris syndrome, and not all affected individuals have the typical features. In addition, people with this condition may have an abnormally small head (microcephaly).
Additionally, some infants and children with Coffin-Siris syndrome have frequent respiratory infections, difficulty feeding, and an inability to gain weight at the expected rate (failure to thrive). Other signs and symptoms that may occur in people with this condition include short stature, low muscle tone (hypotonia), and abnormally loose (lax) joints. Abnormalities of the eyes, brain, heart, and kidneys may also be present."


So in short I do not get your comparison.
 
2013-12-03 10:25:14 AM  
"You don't want to waste a heart on him," Chenkus replied. "You're trying to play God, and you're lying to me."

"So I ask you; when someone goes into that chapel and they fall on their knees and they pray to God that their wife doesn't miscarry or that their daughter doesn't bleed to death or that their mother doesn't suffer acute neural trama from postoperative shock, who do you think they're praying to? Now, go ahead and read your Bible, _Dennis_, and you go to your church, and, with any luck, you might win the annual raffle, but if you're looking for God, he was in operating room number two on November 17, and he doesn't like to be second guessed. You ask me if I have a God complex. Let me tell you something: I am God."

www.filmsnmovies.com

/Really, no one?
//I had a baby born with a "severe heart defect." She was perfect otherwise. She died.
 
2013-12-03 10:35:01 AM  

dfenstrate: Ned Stark: Yes, not performing a multi-million dollar operation to save someone is exactly the same as marching a couple hundred people out to the woods, forcing them to dig a ditch, and machine gunning them all.

Thinking you know how to decide who lives and who dies (when innocent people are on the line) is the first step.


Surely accepting that logic has merit and that its possible to make meaningful decisions at all must come significantly before that particular judgment. Readon itself is therefore the cost step towards genocide, you farking nazi.
 
2013-12-03 10:35:30 AM  

dfenstrate: cybrwzrd: The parents and doctors here are the ones playing god. I fail to see how letting nature take its course is playing god.

Would you, had you the power, stop them from caring for the child, so the money involved might be spent in a way you find better according to criteria you determine?


Had I the power I would change our culture to care more about those who are disadvantaged and living over something that should be dead but is being kept alive unnatually.

Were I their Doctor I would have told them that it is a lost cause and to save themselves the pain and expense of caring for a severly handicapped child for however long medical science can keep it undead for.

If I was their insurance company I would deny the claim because it is overly costly.

And if I was on an Obamacare death panel I would have it liquified at birth and processed into soylent green.

So yes, I would.
 
2013-12-03 10:35:57 AM  

Sandwyrm: This needs to be repeated. The doctors are not arbitrarily deciding a disabled kid needs to die. They are trying to allocate a precious resource based on where it will do the most good.


Based on their assessment of where it will do the most good, by many metrics.  People are offended by two things in this process:

First, eugenics.  Twelve hearts, thirty dying people.  Six of them are unfit--they have genetic defects, they have downs, they are retarded.  Okay then, twelve hearts, twenty-four dying people.  Eight of these are elderly and frail; they won't live long anyway.  Okay, twelve hearts, sixteen people.  We still need to pick four more people to die and we're out of retards, old folks, and gypsies.

Second, getting left out.  The second you're voted off the island, you will be screaming that they should hang somebody else and carve their still-beating heart out of their bloody chest for you.  Parents extend this to children readily; children frequently extend this to parents and siblings.  It is at this moment that a human being conveniently dismisses the fact that they're demanding a death sentence on someone else, while screaming that someone else has no moral right to impose a death sentence on them.

The fact that doctors are fallible, that sometimes they pick wrong, that they sometimes make emotional (i.e. unscientific) or non-emotional (i.e. lacking human compassion) decisions, or whatever else is of no concern.  People cry that they're "playing god" or "negligent" because the five people the doctors selected to die are not the same five people they selected to die; five people must die either way, but that's besides the point.
 
2013-12-03 10:36:03 AM  
Reason* first*
 
2013-12-03 10:42:36 AM  

Agarista: "In the face of such scarcity, doctors try to select the patients most likely to get the longest life, and the highest quality of life, from a new heart. "

I'm sure we can all think of one rather obvious exception to this policy


That's not an exception to the transplant policy.  It's a reminder that "get a second opinion" is always good medical advice.

AGREEING to the transplant that wasn't actually needed would have been way worse.  The policy of "not yours" probably saved the kid's life or at least made what he's got much better than "recovering from a transplant that won't help in the long run for the rest of my life"
 
2013-12-03 10:46:18 AM  
This speaks volumes about the arrogance and egotism of mediocre doctors. The good ones are always humble. They are willing to believe "Maybe we're not doing it right" and try to do things better. Most doctors, on the other hand prefer to wallow in their little God complexes.

FTFA: "On March 20, the doctors called Maverick's parents into a hospital conference room and told them they had just received the results of a genetic test showing Maverick had Coffin-Siris syndrome."
and then the doctors decide he's unworthy of a transplant. The term to describe this attitude is "Lebensunwertes Leben".
 
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