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.

 

[Fareal]

If they don't do that, they'll have no case to decide.

Yes. It's normal for temporary orders like this to be granted in medical cases to effective preserve the status quo until a hearing. Charlie's condition is stable - he's not going to die before Tuesday as long as his current care level is maintained - so there's no benefit to Charlie in having an emergency heraing for which the parties have effectively no time to prepare.

Tuesday's only a few days, but a few days to prepare an appeal case on a case that's already been thoroughly litigated should be enough.

I'm going to assume the parents are going for some combination of Arts 2, 8 and 14, probably with a focus on Art 14.

 

[Lunatic Fringe]

I feel for the parents. They hold on to something that has basically no benefits for their child, but they cling to this out of a kind of desperation that I wouldn't wish upon my worst enemy.

I get the parents are going through hell and I can't imagine how they feel but I don't think they really understand that this "treatment" won't do anything for him. When the court case started I read an article that said the Doctor who offered said he thought the best they could get from the treatment is there is a small chance he might be able to open his eyes. They had doubt he'd be able to see but his eyelids would move.

According to the BBC Article:

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.

I do wonder if the parents have blinkers on and think this treatment is a magic wand which will cure him and that the lawyers in the UK are trying to stop them for some reason.

 

[AnOminous]

I get the parents are going through hell and I can't imagine how they feel but I don't think they really understand that this "treatment" won't do anything for him. When the court case started I read an article that said the Doctor who offered said he thought the best they could get from the treatment is there is a small chance he might be able to open his eyes. They had doubt he'd be able to see but his eyelids would move.

According to the BBC Article:

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.

I do wonder if the parents have blinkers on and think this treatment is a magic wand which will cure him and that the lawyers in the UK are trying to stop them for some reason.

I have no doubt that they're completely delusional and seem to have no grasp on either the factual or legal issues in the case.

 

[Sanshain]

I have no doubt that they're completely delusional and seem to have no grasp on either the factual or legal issues in the case.

Is it any surprise? Court is stressful at the best of times. The court is basically telling them to euthanize their child and get on with their lives. I personally agree with that decision, but I can also understand the incredible trauma these people have gone through.

 

[AnOminous]

Is it any surprise? Court is stressful at the best of times. The court is basically telling them to euthanize their child and get on with their lives. I personally agree with that decision, but I can also understand the incredible trauma these people have gone through.

I can sympathize with them and realize they don't have any grasp on reality at the same time.

 

[captn_kettle]

Rate me powerlevel, but I actually have a nephew with mitochondria.

TL;DR its fucked up, and you gotta make some hard decisions that this family doesn't understand.

 

[LordofTendons]

Why can't the American doctor who wants to treat Charlie be identified? I would like to know what hospital or research center he's affiliated with.

"The American, who cannot be identified"

http://www.bbc.com/news/uk-england-london-39478466

 

[captn_kettle]

Why can't the American doctor who wants to treat Charlie be identified? I would like to know what hospital or research center he's affiliated with.

"The American, who cannot be identified"

http://www.bbc.com/news/uk-england-london-39478466

Because of people who have no fucking idea about the condition goto social media and pretend they know

 

[LordofTendons]

Because of people who have no fucking idea about the condition goto social media and pretend they know

So there's no legal reason? Because I think it's really curious that even the facility hasn't been named. Places like these in America-- medical research and children's hospitals-- get a lot of their money from donors. Hopefully they'll get big donations from rich people with a soft touch, but also they do charity shaming at the grocery checkout and community fundraising.

One of the ways they get people to reach in their jeans and pull out those greens is with big news stories about little sick children from foreign countries. Nothing tugs on American heart strings more than seeing little foreign children being flown in from Wherever to get Whatever The Treatment. Every time there's a news story like that, the donations surge. It doesn't matter if the kid is from some third world hell hole, or from an ally we consider to be civilized and advanced like the UK. We love it when foreign kids come here for medical treatment, and it makes us give money to children's hospitals and R&D.

So the fact that the doctor and whatever facility he's using haven't been named is absolutely fascinating to me. Because if Americans were to get wind of it, they'd want to give this guy lots and lots of money.

 

[AnOminous]

Rate me powerlevel, but I actually have a nephew with mitochondria.

You will have to clarify, because every single living animal has mitochrondria.

 

[AnOminous]

So there's no legal reason?

Legal reason? Fuck you!

There's a "reality reason." And that's that as soon as you get mentioned in some dumbass news story, every goddamn retard on the planet with an Internet connection suddenly starts harassing you and showering you with death threats, even if you have an actual job to do.

 

[LordofTendons]

Legal reason? Fuck you!

There's a "reality reason." And that's that as soon as you get mentioned in some dumbass news story, every goddamn exceptional individual on the planet with an Internet connection suddenly starts harassing you and showering you with death threats, even if you have an actual job to do.

I am not from the UK and I didn't know if there was a court order not to release the Amercian's name for some reason or what the deal might be. It looks like just about everybody's name has been released but his. Excuse the shit out of me for not assuming how things work over there.

 

[Joan Nyan]

Yet more proof that the UK is not, in any sense, a free country. When the government declares that you're not allowed to get medical treatment for your own children, you know you're living in a tyranny.

 

[captn_kettle]

You will have to clarify, because every single living animal has mitochrondria.

Sorry the mitochondrial disease.

It's usually stabilized with steroids. But when puberty hits, the cells can't provide enough energy for the body to function. So typically through the teenage years people with mitochondrial disease will begin to deteriorate and eventually their organs fail. Also any colds or illnesses can cause lengthy hospital visits.

There are 2 main types of mitochondrial disease. One type is passed from both mother and father, the other is passed from mother only.

I only know about that much since I rarely see them but I had to research it for something that affects us. But long story short, when he's 13 or 14, we'll be going to his funeral.

From what I understand, there's no real guarantee this will work or even be effective because of the severity of the case. Not only this, he's also suffered a profound hypoxic event leading to brain damage. Transporting him safely to the medical centre in the states is going to be hugely risky, and there's a very good chance he will die on the way.

Which comes the question, would you risk it and your child die under distress, or make your child's last moments as comfortable as possible?

It's a huge gamble and cases like this tend to divide opinion. Whatever the outcome though, there's a perfectly reasonable argument as to why it was right and why it was wrong.

I do feel sorry for the parents though. A decision like this is a difficult one to make, and one that not everybody will understand. The most difficult thing is detaching your own interests from the interests of the child.

Edit: sorry the steroids are mainly for his congenital myastenic syndrome.

 

[Ginger Piglet]

Yet more proof that the UK is not, in any sense, a free country. When the government declares that you're not allowed to get medical treatment for your own children, you know you're living in a tyranny.

The point is that there is no medical treatment. Even this "experimental" treatment has roughly a 5% chance of success if you define success as "he lives in agonising pain for a few more months."

At least it's a proper treatment they're trying to pursue for him and not some godawful woo woo nonsense at the Burzynski or wherever.

 

[Joan Nyan]

The point is that there is no medical treatment. Even this "experimental" treatment has roughly a 5% chance of success if you define success as "he lives in agonising pain for a few more months."

But why is an old guy in a ridiculous white wig more qualified to make medical decisions for someone's kids than the parents?

 

[Ginger Piglet]

But why is an old guy in a ridiculous white wig more qualified to make medical decisions for someone's kids than the parents?

It will be based on all the evidence put forward each way including most likely several sets of expert evidence. I'm sure if you look on Bailii you can find the full judgement which will explain exactly how the decision was arrived at.

And in the Supreme Court it would be a panel of 3, 5, or 9 of them.

 

[Enclave Supremacy]

But why is an old guy in a ridiculous white wig more qualified to make medical decisions for someone's kids than the parents?

What makes the parents more qualified? You just seem more bitter at authority than anything. The child is in a hospital and is the legal responsibility of the doctors there and can't just be removed on a whim of the frankly uneducated opinion of his parents. Even if they were entirely aware that the treatment couldn't cure him they also don't have the legal authority to just give their child over for medical experimentation (regardless of how "noble" the cause is).

I imagine that people would be crowing a different tune if the parents were talking about some holistic nonsense even though the principle would still be the same.

 

[Ginger Piglet]

I imagine that people would be crowing a different tune if the parents were talking about some holistic nonsense even though the principle would still be the same.

Well quite. The only people reeeeeeing about parental freedoms in such a case would be the people selling the quacky-duck woo woo treatment in the first place.

 

[Mariposa Electrique]

The point is that there is no medical treatment. Even this "experimental" treatment has roughly a 5% chance of success if you define success as "he lives in agonising pain for a few more months."

At least it's a proper treatment they're trying to pursue for him and not some godawful woo woo nonsense at the Burzynski or wherever.

It's a parent's job to make sure they can do everything in their power for their child, even if that means giving them a 5 percent chance at survival. Either way, the kid will die, at least the parents can have some sort of closure knowing they did everything they could. It would be a completely different story if these people were just taking their child home, going down to the basement, and rubbing him in magical cow dung given to them by a local swami.