Charlie Gard.
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03-07-2017, 07:33 PM
Thinking of Charlie Gard
To preface, I'm posting this in Casual, since it seems to cover multiple genres: political, medical, morals & ethics. I'm sure the mods (Thumbsup ) will move it if they feel the need.

So. I was wondering if anyone else has seen the stories regarding Charlie Gard. He's a terminally ill infant who's life support will be turned off on Friday.

BBC video

CNN story 1

CNN story 2

Quote:Born in August, Charlie Gard has a rare genetic disorder known as mitochondrial DNA depletion syndrome. Caused by a genetic mutation, it leads to weakened muscles and organ dysfunction, among other symptoms, with a poor prognosis for most patients.

Charlie's condition has deteriorated since birth. The doctors treating him have determined that further treatment will only prolong the inevitable. The child is dying, painfully, and the most humane thing is to allow him to die.

The parents disagree and have appealed to the courts.

The UK Supreme Court considered the case and sided with the doctors. (Twice.)

The European Union Supreme Court also sided with the doctors:

Quote:The court said the decision was meticulous, noting that they spoke with Charlie's health care providers, independent experts, experts recommended by the family, and Charlie's parents to inform the ruling. In the end, the press released said they determined, "it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm."

The parents had wanted to bring the child to the US for an experimental treatment that doctors say will not work.

Quote:According to bioethicist Julian Savulescu of the Oxford Uehiro Centre for Practical Ethics, the experimental therapy offers a very small chance of some improvement. In fact, it has never been used to treat this form of mitochondrial DNA depletion syndrome, according to the British ruling, though it has proved beneficial to patients with a different form of the disease.

Of course, the Pope had to weigh in:
Quote:On Sunday, Pope Francis called for the parents of the baby, who is in a hospital in London, to be allowed to "accompany and treat their child until the end."

I note that while the pontiff offered prayers, no offer of financial assistance was mentioned, nor any other real help, such as a papal jet or airline tickets, etc. Go figure.

And, surprisingly Trump felt the need to become involved. Because, you know, using a dying infant for political gains is perfectly acceptable in Donny-Land.

Quote:If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.

No matter how you look at it, the whole episode sucks.

It sucks for the parents, who have to watch their child die, desperately clinging to any hope they can.

It sucks for the doctors who are unable to treat him.

It sucks that world leaders will exploit the pain and suffering of the vulnerable.


Most of all, it sucks for Charlie, who never had a chance.

Help for the living. Hope for the dead. ~ R.G. Ingersoll

Freedom offers opportunity. Opportunity confers responsibility. Responsibility to use the freedom we enjoy wisely, honestly and humanely. ~ Noam Chomsky
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03-07-2017, 07:47 PM
RE: Thinking of Charlie Gard
(03-07-2017 07:33 PM)Fatbaldhobbit Wrote:  To preface, I'm posting this in Casual, since it seems to cover multiple genres: political, medical, morals & ethics. I'm sure the mods (Thumbsup ) will move it if they feel the need.

So. I was wondering if anyone else has seen the stories regarding Charlie Gard. He's a terminally ill infant who's life support will be turned off on Friday.

BBC video

CNN story 1

CNN story 2

Quote:Born in August, Charlie Gard has a rare genetic disorder known as mitochondrial DNA depletion syndrome. Caused by a genetic mutation, it leads to weakened muscles and organ dysfunction, among other symptoms, with a poor prognosis for most patients.

Charlie's condition has deteriorated since birth. The doctors treating him have determined that further treatment will only prolong the inevitable. The child is dying, painfully, and the most humane thing is to allow him to die.

The parents disagree and have appealed to the courts.

The UK Supreme Court considered the case and sided with the doctors. (Twice.)

The European Union Supreme Court also sided with the doctors:

Quote:The court said the decision was meticulous, noting that they spoke with Charlie's health care providers, independent experts, experts recommended by the family, and Charlie's parents to inform the ruling. In the end, the press released said they determined, "it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm."

The parents had wanted to bring the child to the US for an experimental treatment that doctors say will not work.

Quote:According to bioethicist Julian Savulescu of the Oxford Uehiro Centre for Practical Ethics, the experimental therapy offers a very small chance of some improvement. In fact, it has never been used to treat this form of mitochondrial DNA depletion syndrome, according to the British ruling, though it has proved beneficial to patients with a different form of the disease.

Of course, the Pope had to weigh in:
Quote:On Sunday, Pope Francis called for the parents of the baby, who is in a hospital in London, to be allowed to "accompany and treat their child until the end."

I note that while the pontiff offered prayers, no offer of financial assistance was mentioned, nor any other real help, such as a papal jet or airline tickets, etc. Go figure.

And, surprisingly Trump felt the need to become involved. Because, you know, using a dying infant for political gains is perfectly acceptable in Donny-Land.

Quote:If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.

No matter how you look at it, the whole episode sucks.

It sucks for the parents, who have to watch their child die, desperately clinging to any hope they can.

It sucks for the doctors who are unable to treat him.

It sucks that world leaders will exploit the pain and suffering of the vulnerable.


Most of all, it sucks for Charlie, who never had a chance.

Sorry for little Charlie and his parents! So, the Chump is offering up money from where, to help the pitiful tyke? The US of A, where current legislation is being worked to remove availability of medical care to their own population? FFS. Facepalm
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03-07-2017, 08:00 PM
RE: Thinking of Charlie Gard
God, few things make me angrier and more disgusted, than using the tragedies of others for your own personal agenda. When it's a political (and yeah, I include the pope in this) one - it's even worse.

Poor, poor child. "Ms Gollop said nobody knew whether Charlie was in pain. 'Nobody knows because it is so very difficult because of the ravages of Charlie's condition," she said. "He cannot see, he cannot hear, he cannot make a noise, he cannot move.'"

And if he already has brain damage, what real chance for any sort of life does he have?

Poor baby...

"E se non passa la tristezza con altri occhi la guarderò."
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03-07-2017, 09:04 PM
RE: Thinking of Charlie Gard
At least with Pope Francis I believe he's operating at least partially from "I'm being pressured to weigh in and have to do so in line with church teaching about the sanctity of life". With Trump though, it's entirely political. This is the sort of grandstanding he does that makes my pro-life friends go, "See, Trump is one of us, he's a good guy, we need to keep supporting him." I've seen this all over Facebook for a few days, mainly from Evangelical friends railing against "big government trying to kill a child".

No, this child has brain damage. He's unaware of the world around him. His condition means his life will not be long. There's no need to prolong it, especially with no one home (nor a chance even to develop his own personal self). Sad Let his suffering stop.

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03-07-2017, 10:03 PM
RE: Thinking of Charlie Gard
I saw this today on FB, a republican acquaintance of mine sharing this story as a testament against 'socialized medicine' and the government making health decisions.

So I guess it would be better for insurance to deny his procedures and round the clock care, the parents to have fundraiser after fundraiser to pay for everything, and for them to ultimately lose their house, jobs, and go into bankruptcy?
(aka U.S. healthcare.)

Also? fuck these people using him as a means to their political gain. This child is suffering, he's not a pawn in your game. UGH.

"If you don't have a seat at the table, you're probably on the menu."

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03-07-2017, 11:58 PM
RE: Thinking of Charlie Gard
Of course this is a supremely tragic event for the parents, but the rights of the baby override those. That is, the right to as painless a death as possible, less any sort of clinical politics.

That his parents want to follow some foolish and hopeless search for no sustainable humane reason should not be allowed, so I fully concur with taking him off life support.

The other mitigating factor is that he's totally non-functional—he can't see or hear, he can't breath or eat, and he can't move. And at 9 months of age, he's not even slightly self-aware, so his pain responses are purely reflexive—his diagnosis is clinically defined as a permanent vegetative state. Although some doctors prefer the more politically-correct "unresponsive wakefulness syndrome".

I'm a creationist... I believe that man created God.
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04-07-2017, 12:46 AM
RE: Thinking of Charlie Gard
It sucks but I agree with doctors here. Parents have no right to force their children endure suffering when there is no hope of getting better.

The first revolt is against the supreme tyranny of theology, of the phantom of God. As long as we have a master in heaven, we will be slaves on earth.

Mikhail Bakunin.
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04-07-2017, 01:41 AM
RE: Thinking of Charlie Gard
I hadn't really heard about this, until I saw it posted on a religious site. They were going on and on about how evil it is that the medical people won't help the child live longer. NOT ONE word about "releasing" the child to go to "heaven" where it obviously (in their world) would be much better off. Almost like they didn't actually believe in heaven. Facepalm

Insufferable know-it-all.Einstein God has a plan for us. Please stop screwing it up with your prayers.
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04-07-2017, 06:36 PM
Charlie Gard.
So, this baby Charlie Gard was born deaf, blind, couldn't talk, move etc.. basically he was born with this fucked up disease that screwed him over and will soon kill him. Gods plan and all that.. Dodgy

Anyway, so there's this experimental treatment in the US and so the family started a go-fund-me and raised over $1.2million. BUT the hospital where Charlie was disagreed that this treatment was a good idea and wanted to take Charlie off life support to let him 'die with dignity'. It went to the courts where the courts ruled in favor of the hospital. The family appealed and it eventually ended up in the European Court of Human Rights where they ruled in favor of the hospital.

So the family than wanted to bring Charlie home to let them care for him there and let him die there BUT again the hospital refused. The hospital even refused any hospice service. And remember, the family has $1.2million for the care of this kid, they were willing to pay for everything.


I'm not sure how I feel about this. Knee jerk reaction is that the government is grossly overstepping their bounds here. I mean they effectively decided for the parents that their baby was going to die and where he was going to die.

On the other, the government is responsible for the safety of all citizens and if this treatment meant he might suffer maybe they did the right thing. I look at it almost like one of those religious nuts that don't believe in medicine and let their children just die from stupid shit. The government should step in in those cases to save the children. It's almost a similar situation to that. So I dunno.

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04-07-2017, 06:56 PM
RE: Charlie Gard.
Not going to look for a source now, but I read someplace that the brain damage is permanent even if he lives, and the US hospital mostly wants him to study and experiment on.

His docs are resisting that notion and it's considered unnecessary cruelty. They are convinced he cannot be fixed and don't want him to be a Guinea pig.

[Image: dobie.png]Science is the process we've designed to be responsible for generating our best guess as to what the fuck is going on. Girly Man
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