UN Charlie Gard, 10 months old, is denied experimental treatment in US - Time for some depression

Meet Charlie.

http://www.bbc.co.uk/news/uk-england-40206045

Charlie has a very rare genetic condition that effectively confines him to a vegetative state. He cannot even breathe without the help of a machine. His parents wanted to take him to the US for some experimental therapy that MIGHT have been able to save him. The hospital he is in disagreed. So they took this case to the Supreme Court.

The Supreme Court has rejected an appeal by the parents of sick baby Charlie Gard, over plans to take him to the US for treatment.

Chris Gard and Connie Yates want the 10-month old, who suffers from a rare genetic condition, to undergo a therapy trial.

His mother broke down and screamed as the decision was announced.

Charlie can stay on life support for 24 hours to give the European Court of Human Rights a chance to give a ruling.

He has been in intensive care at Great Ormond Street Hospital since October last year.

The hospital said therapy proposed by a doctor in America is experimental and that Charlie's life support treatment should stop.

Charlie has mitochondrial depletion syndrome, a rare disorder that affects the genetic building blocks that give energy to cells.

The family division of the High Court agreed two months ago that the hospital could withdraw Charlie's life support.

His parents have raised more than £1.3m through an internet appeal, in the hope they could take him to America for an experimental treatment.

Specialists in the US had offered a therapy called nucleoside.

Charlie's supporters gathered outside the court ahead of the hearing.

Holding pictures of the 10-month-old they chanted 'Save Charlie Gard' and "give him a chance".

Inside his parents waited for the decision. This is the final court in the UK able to hear their case.

Justice Lady Hale began by praising their devotion, as parents we would all want to do the same she said.

But as judges and not as parents they were concerned with the legal position and the proposed appeal she said was refused.

Charlie's mother Connie left the court wailing and shouting "they've put us through hell".

Chris, Charlie's father, held his head in hands and cried.

This may though not be the end. They want to try and take their case to the European Court of Human Rights.

Katie Gollop QC, leading Great Ormond Street's legal team, said the case was "sad" but not "exceptional".

She said the couple seemed to be suggesting that "parents always know best".

"Fundamentally the parents don't accept the facts," she said. "They don't accept that nucleoside therapy will be futile."

The court had earlier heard how Charlie could not could see, hear, move, cry or swallow.

Ms Gollop added: "He is on a machine which causes his lungs to move up and down because his lungs cannot go up and down.

"Charlie's condition affords him no benefit."

Following the ruling Ms Yates screamed outside court: "How can they do this to us?"

"They are lying. Why don't they tell the truth?", she said.

Charlie's life support machine will continue until Friday at 17:00 BST to give judges in Strasbourg, France, time to look at the case, the court said.

The case is now going to Strasbourg to be heard by the ECHR. Charlie will be kept on life support for another 24 hours to give the judges there time to think about the case.

This is sad, but I think the correct decision would be to shut off that life support and end this poor child's suffering.

 

[Dysnomia]

Yeah.

There also is a relative leeway here in the states to neglect, faith heal, or woo-woo/alternative medicine your sick/disabled kids to death, if it's based on "sincerely held belief."

This has been making the rounds here recently.

http://www.ktvb.com/news/health/pra...-woman-wants-her-parents-prosecuted/143065904

I hope she wins. Praying to a magical mythological sky man will not cure your child's illness. If God is so great why should you even have to repeatedly beg him for help to begin with?

Charlie's brain damage was pretty bad wasn't it? Even if he recovered in some way he'd be a potato or semi-potato for life. It might sound cold but his parents can have another child. Keeping people hooked up to tubes when there's no hope in inhumane. I really don't believe this therapy would have done much, if anything. The boy it worked on had a different variation of the condition. Charlie's was ultra rare.

I really think we should let the terminally ill die with dignity. Just look at Jahi McMath. Still hooked up to machines. That child has been dead for years but they won't let her go.

 

[ICametoLurk]

Here's another thing. His parent's legal case was funded by donations but the NHS legal side is funded by taxpayers.

How much taxpayer money did the NHS spent trying to prevent his treatment.

 

[Null]

Here's another thing. His parent's legal case was funded by donations but the NHS legal side is funded by taxpayers.

How much taxpayer money did the NHS spent trying to prevent his treatment.

The government could afford that because it preserves their power over individuals.

 

[HG 400]

lol owned i hate babies

 

[LulzKiller]

Here's another thing. His parent's legal case was funded by donations but the NHS legal side is funded by taxpayers.

Talking irrespective of this whole issue (people are getting really amped up on this and should calm down); trying to get Legal Aid is a quagmire in Britain and has been the source of cuts made by the current government, meaning whether you get it or not is more often a matter of luck.

 

[Johnny Bravo]

The government could afford that because it preserves their power over individuals.

You know, it would have been super easy for the hospital to just kill the kid while nobody was looking once this case started dragging out. They could just say he had another bad seizure and they couldn't save him. Would have saved the government a lot of money and supported their case that Charlie was beyond help.

 

[AnOminous]

That is why I refered to it as a slippery slope. And the first step is by no means a small or insignificant one.
You take away Charlie's rights to retain his bodily integrity to make him undergo a pointless treatment just to gather some data.

Whereas you'd rather take away his right to have decisions about his well being made by people who actually care about him instead of strangers, and by assuming that he wouldn't want heroic measures, even when it is those people and not the public paying for it.

 

[escapegoat]

I have never really understood why death panels employed by Aetna or Anthem are sooooo much better than death panels employed by the NHS? Either way people are dying.

 

[Darndirty]

It's kind of wild that a literal death panel has power over a child's life and the parents are robbed of any agency in making decisions about their child's future. Doesn't even look like they'll let the baby die at home.

On the other hand jfc best case scenario even if the therapy worked the kid would be worse off than Kylie Brooks and be miserable their entire life just let the kid die and pop out another

It makes me think of the Terry Schiavo case where the parents were keeping her alive against the will of her husband, everyone knew that plug needed to be pulled they even put her on television drooling on herself, that was the case which made me put into actual writing that no do not ever keep me alive like that, my mom is a pussy, I don't trust her to pull my plug.

 

[Ruin]

One of the weirdest things about Britcucks is that they sneer at Americans who believe single payer healthcare will result in care rationing and death panels, and call them conspiracy theorists then five minutes later praise those very same things when they happen.

 

[Null]

You know, it would have been super easy for the hospital to just kill the kid while nobody was looking once this case started dragging out. They could just say he had another bad seizure and they couldn't save him. Would have saved the government a lot of money and supported their case that Charlie was beyond help.

What???? You're trying to say I'm wrong because they didn't order a nurse to smother the fucking thing with a pillow? What the fuck? They usually don't do MI6 shit on tard babies dude

 

[escapegoat]

It makes me think of the Terry Schiavo case where the parents were keeping her alive against the will of her husband, everyone knew that plug needed to be pulled they even put her on television drooling on herself, that was the case which made me put into actual writing that no do not ever keep me alive like that, my mom is a pussy, I don't trust her to pull my plug.

This is why they ask if you want to sign a DNR now, before so much as pulling out a splinter. Just in case.

 

[Johnny Bravo]

What???? You're trying to say I'm wrong because they didn't order a nurse to smother the fucking thing with a pillow? What the fuck? They usually don't do MI6 shit on tard babies dude

If their end goal was to make the baby dead why not? That's the point of a death panel, to decide who dies and then "allow" them to die.

Or maybe the UK was just acting in the best interests of the child as defined by their laws. I think their decision was morally wrong and they should have allowed the parents to take the kid to the US for treatment in a timely manner, even if it turned out to be complete BS, but this death panels conspiracy shit is exceptional.

 

[Null]

If their end goal was to make the baby dead why not? That's the point of a death panel, to decide who dies and then "allow" them to die.

Or maybe the UK was just acting in the best interests of the child as defined by their laws. I think their decision was morally wrong and they should have allowed the parents to take the kid to the US for treatment in a timely manner, even if it turned out to be complete BS, but this death panels conspiracy shit is exceptional.

Because fucking up in a legal contest is not as bad as having the nurse tell people the Government asked her to smother an infant to death? Are you nuts?

 

[ICametoLurk]

One of the weirdest things about Britcucks is that they sneer at Americans who believe single payer healthcare will result in care rationing and death panels, and call them conspiracy theorists then five minutes later praise those very same things when they happen.

If only this happened before the Ted Cruz vs Bernie Sanders debate on CNN. The whole "debate" was just Cruz talking how the UK NHS is something you would see from a dystopia novel and Bernie kept saying "Ok, but it's still way better than what we have now!".

It would've been more fun to watch.

 

[Johnny Bravo]

Because fucking up in a legal contest is not as bad as having the nurse tell people the Government asked her to smother an infant to death? Are you nuts?

Yeah, that's why they don't tell anyone. They would simply claim Charlie had another seizure and it took his life. No one can dispute their claim, the parents look like assholes, and the courts can say they made the right decision. You think the UK has secret death panels but you don't think they're prepared to murder babies and cover it up.

 

[Lurker]

I really dislike when people use the term "death panels", because it's a loaded term that's meant to play on peoples' emotions.

So the way I see it, when you have two parents who are too delusional to see that their child is fucked, there needs to be a point where someone advocates for the child in the parents' stead. When we have dumb motherfuckers praying to their sky daddy, or using crystals, or using homeopathic remedies, instead of accepting actual science, it's no longer about the wellbeing of the child. It's about the beliefs of the parents. And sometimes, believe it or not, the parents don't know what's best for their own kid. In many situations it becomes an ideological battle where the child almost seems to take a back seat to the parents and their ideologies.

Maybe I'm weird, or maybe I'm just one of those libtard cucks, but in a case where it's clear that the parent/s are fucking delusional, I think I'd like a neutral third party to step in on my behalf.

With this case, I think that the parents should have had a right to at least take the kid home, for fuck's sake. I'm kind of on the fence whether they should have been permitted to go to the US, though. Because on one hand they did have the money, so they could have paid for this treatment out of pocket, but on the other hand most every single medical expert concluded that this treatment would do fuck-all for Charlie, and that even if it extended his life for some negligible amount of time, the quality of life would be nonexistent. Keep in mind that this is a degenerative disorder, and that when shit's gone, it's gone. He would never be off machines. He would never wake up from his vegetative state. All that would happen is that his death could potentially be delayed, and during that time he could be studied. And like I said in a post earlier in this thread, I do see the merit of using "living specimens" in order to research rare diseases, but then, in my opinion, the kid no longer matters. It's about the research. The kid's existence ends up being reduced to "test subject", and, in my opinion, that seems inhumane.

I think that some people in this thread are being assholes, to be honest, and acting as though the people who disagree with them are monsters or cucks or whatever. There is no "correct" opinion here. And it's not even a matter of morals. It boils down to people having opinions on something that, luckily, doesn't affect them.

At the end of the day, though, this case has brought to light the possible issues with government intervention in regards to peoples' health. And I think that that's a good thing to take away from all of this.

Edit: To those of you talking about "death panels", consider the following: What do you think our insurance companies in the US are? Are they not a third party who acts as the middleman between you and your doctor, and they determine what is and is not necessary to cover? But we're okay with this for some reason, right? Because it's what we've always done. But, you know, just something to ponder about.

 

[RomanesEuntDomus]

Whereas you'd rather take away his right to have decisions about his well being made by people who actually care about him instead of strangers

I might be mistaken, but there is no such right as "having decisions made on your behalf".
There is, however, the parent's right to exert their parental authority over their child and the question this case raises is where it stops and if (or when) goverment can and should get involved.
This distinction is important cause the wellbeing and the right to retain the bodily integrity of the child outranks the parents right of authority in the UK.
Also, to me, the parent's behaviour looks less like them wanting "the best for their child" and a lot more like they are essentially deep in denial about their child's condition and try to cling to a vain hope of somehow healing him with some experimental treatment which is to the child's detriment, since it apparently, -according to a shitton of doctors including the ones suggesting the treatment- won't do anything significant for the child aside from possibly prolonging or worsening his suffering.
However I will admit that this last point about the parents being in denial is merely conjecture on my part (confident of that assertion as I am) and I am only mentioning this so you understand where I'm coming from with my argument.

And who says the people on the NHS do not care about the well-being of Charlie?
Withholding experimental treatment that is most likely entirely futile and would cause the child suffering doesn't seem like they don't care to me.

And on a sidenote, at no point was I actively against Charlie being send off to the US for this treatment - I merely understand the reasoning behind the NHS' decision to forbid it.
If the parents had prevailed, I wouldn't have written angry textdumps about disagreeing with the decision - even though I would have felt sorry for Charlie.

and by assuming that he wouldn't want heroic measures, even when it is those people and not the public paying for it.

See, where this whole thing just falls apart for me is where people seem to assume that this treatment would actually benefit the child in any way. Apparently, it wouldn't.
I would also not have guessed that it would be up to debate whether or not doing something to someone's disadvantage without their consent is unethical or not.
But I guess that's the difference in culture that I mentioned earlier. Mind you, this is not meant to be judgemental. I am just mildly surprised.

 

[WW 635]

lol owned i hate babies

Babies carry disease

 

[captn_kettle]

And on a sidenote, at no point was I actively against Charlie being send off to the US for this treatment - I merely understand the reasoning behind the NHS' decision to forbid it.
If the parents had prevailed, I wouldn't have written angry textdumps about disagreeing with the decision - even though I would have felt sorry for Charlie.

This is pretty much the standpoint of any britfags with an opposing opinion.

It's not about flashing to the yanks about whether we have a better or worse healthcare system, it's not about "dem death panels" and its not about "muh feels". It's about whether the choices made are inhumane and cruel to the patient.