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.

 

[Null]

You can't use a non-consenting child for medical experimentation or as an exercise to grab data,

This is an incredibly poor argument. A child cannot consent to anything. In the United States, we presume that a person desires to live almost without exception, and those exceptions are either (a) having a DNR is signed beforehand, (b) all trustees consent to it on their behalf.

 

[Enclave Supremacy]

This is an incredibly poor argument. A child cannot consent to anything. In the United States, we presume that a person desires to live almost without exception, and those exceptions are either (a) having a DNR is signed beforehand, (b) all trustees consent to it on their behalf.

Quite possibly but I don't make the law, this is (I believe) the viewpoint of British law however. That parents don't necessarily have final dictat over their children. It would be the same if they were trying to remove Charlie for a prayer meeting or crystal therapy. Maybe they do assume that a person desires to live but if it can't be proved that it would actually ensure that then they'll just dismiss the case.

It could very well be a common-law matter, allowing him to be removed without sufficient evidence that it would actually increase the child's well-being creates a precedent that other parents could use for far less justifiable treatments.

Like it or not, UK law does not necessarily consider a child's parents as the ultimate authority on what happens to that child.

 

[Null]

That parents don't necessarily have final dictat over their children.

Yeah your country can get fucked. Everything I read about the UK makes me more strongly believe Hitler should have won.

 

[Enclave Supremacy]

Yeah your country can get fucked. Everything I read about the UK makes me more strongly believe Hitler should have won.

Children are individual citizens before they are property of their parents. Being their parents doesn't entitle you to control over their medical treatment when your medically illiterate.

Sorry that the law isn't flexible enough to include a clause on "valuable medical research" when preventing everyone from religious crazies to uneducated spergs like Charlie's parents from being able to have complete autonomy over their child's medical treatment.

It's a highly complex issue obviously when the state is intruding on a family affair but when it comes to things like life-determining healthcare the doctors in whose care Charlie is in outrank the parents on the basis of professional merit. If the British political system weren't so glacial then maybe the law could be more bespoke.

 

[DoctorJimmyRay]

I'm sure discussion over this subject will be level-headed and dispationate, complete with mutual respect for both parties involved, in order to ensure the best outcome for Charlie, as well as anyone else who would be affected by this precedent.

Surely, emotionally charged outage and logically suspect rhetoric won't be driving public discussion over the issue.

(I didn't post in time to get to the front of this thread, but I'm too exceptional to let it go.)

 

[captn_kettle]

I'm sure discussion over this subject will be level-headed and dispationate, complete with mutual respect for both parties involved, in order to ensure the best outcome for Charlie, as well as anyone else who would be affected by this precedent.

Surely, emotionally charged outage and logically suspect rhetoric won't be driving public discussion over the issue.

(I didn't post in time to get to the front of this thread, but I'm too exceptional to let it go.)

Quite possibly the best fucking comment posted here.

 

[Mesh Gear Fox]

I'm fully aware my opinion on this matter is extremely unpopular. That's fine, it doesn't matter to me if you all don't like it. At the end of the day, the only thing that matters is the opinion of the people directly involved with this case (attending physicians, hospital administrators and the court system) are in agreement that this would not benefit the child or the medical community, and a poor use of resources.

Does it make me sound like a cold, calloused asshole? You bet! But the medical staff treating him have made the right call. Sorry.

 

[Ruin]

I'm fully aware my opinion on this matter is extremely unpopular. That's fine, it doesn't matter to me if you all don't like it. At the end of the day, the only thing that matters is the opinion of the people directly involved with this case (attending physicians, hospital administrators and the court system) are in agreement that this would not benefit the child or the medical community, and a poor use of resources.

Does it make me sound like a cold, calloused asshole? You bet! But the medical staff treating him have made the right call. Sorry.

The NHS is widely considered to be one of the most inefficient and badly mismanaged medical bodies in the western world. I don't think the kid has a chance either but I wouldn't treat the word of the NHS like it's gospel or anything.

 

[Mesh Gear Fox]

The NHS is widely considered to be one of the most inefficient and badly mismanaged medical bodies in the western world. I don't think the kid has a chance either but I wouldn't treat the word of the NHS like it's gospel or anything.

I don't but that doesn't change the fact that all these clinicians and admins have come to the same conclusion. Even the study authors admit this treatment won't work for him.

 

[Ruin]

I don't but that doesn't change the fact that all these clinicians and admins have come to the same conclusion. Even the study authors admit this treatment won't work for him.

Of course it won't, that kids organs are so badly deformed recovery is impossible. I'm just against the precedent of declaring the NHS the final authority on anything when they struggle to secure even basic funding. The NHS is the U.S Postal Service of medical bodies.

 

[AnOminous]

Like it or not, UK law does not necessarily consider a child's parents as the ultimate authority on what happens to that child.

This is called having a nanny state.

It can pretty much go fuck itself afaic.

In this case, it's a pretty core component of being a parent to have the right to make medical decisions, especially in a case where the welfare of the child essentially doesn't even exist.

I'm fully aware my opinion on this matter is extremely unpopular. That's fine, it doesn't matter to me if you all don't like it. At the end of the day, the only thing that matters is the opinion of the people directly involved with this case (attending physicians, hospital administrators and the court system) are in agreement that this would not benefit the child or the medical community, and a poor use of resources.

I frankly take the opinion of the utility of doing it more seriously from people on the cutting edge of research than the kind of semi-competent asshole who ends up a middle management health bureaucrat in some rain-soaked hellhole.

 

[Enclave Supremacy]

This is called having a nanny state.

It can pretty much go fuck itself afaic.

In this case, it's a pretty core component of being a parent to have the right to make medical decisions, especially in a case where the welfare of the child essentially doesn't even exist.

It really isn't. Having government pay-outs and social programmes every-time someone cocks up, negating personal responsibility, is having a nanny-state and we have plenty of that.

Doctors not discharging a sick patient or allowing them to be whisked away for any-kind of treatment that cannot be proved will have a chance of recovery is not being a nanny-state.

Yeah I'm sure the judge is going to consider "Well he's effectively dead and going to die so do what-ever," I can't imagine setting that legal precedent will have any negative repercussions re giving the government the ability to just write-off a human-life.

 

[AnOminous]

It really isn't. Having government pay-outs and social programmes every-time someone cocks up, negating personal responsibility, is having a nanny-state and we have plenty of that.

Doctors not discharging a sick patient or allowing them to be whisked away for any-kind of treatment that cannot be proved will have a chance of recovery is not being a nanny-state.

Yeah I'm sure the judge is going to consider "Well he's effectively dead and going to die so do what-ever," I can't imagine setting that legal precedent will have any negative repercussions re giving the government the ability to just write-off a human-life.

So what you're saying is just ignore the actual reality of the situation in favor of the opinions of some faceless bureaucrats.

Just accept whatever decision gets spat in your face and disallow people from making decisions about their own families.

 

[Mesh Gear Fox]

So what you're saying is just ignore the actual reality of the situation in favor of the opinions of some faceless bureaucrats.

And the clinicians who evaluated him and reached the same conclusion. The reality is that he has severe organ damage and has a terminal illness. He will die and nothing will change that. This treatment will not reverse the organ and brain damage he has already suffered.

 

[AnOminous]

And the clinicians who evaluated him and reached the same conclusion. The reality is that he has severe organ damage and has a terminal illness. He will die and nothing will change that. This treatment will not reverse the organ and brain damage he has already suffered.

What about the opinion of people who are specifically researching this specific disorder? They seem to think there is at least some clinical purpose in investigating this particular disorder, and are entirely willing to do it, and $1.7 million in funding is available to do this, and the parents of the child in question want to do it, but you think some people with no interest whatsoever in any of the actual people involved should have the ultimate choice.

Even though it's the NHS, a notoriously incompetent body of idiots.

Wow!

 

[Mesh Gear Fox]

They also had an independent medical team in Barcelona (not NHS physicians) reach the same conclusions. Again, the study authors themselves have said

"Seeing the documents this morning has been very helpful. I can
understand the opinions that he is so severely affected by
encephalopathy that any attempt at th
erapy would be futile. I agree that
it is very unlikely that he will improve
with that therapy. It is unlikely."

 

[AnOminous]

They also had an independent medical team in Barcelona (not NHS physicians) reach the same conclusions. Again, the study authors themselves have said

"Seeing the documents this morning has been very helpful. I can
understand the opinions that he is so severely affected by
encephalopathy that any attempt at th
erapy would be futile. I agree that
it is very unlikely that he will improve
with that therapy. It is unlikely."

That's not even the issue, though. Sure, they're seeking an unlikely therapy, but they have the money. It isn't even just their money. Lots of people have coughed up money for this $1.7 million fund. People who certainly know a lot more about this particular disorder than the ghouls of the NHS are willing to accept it and at least do whatever they can do.

How the fuck is it within the power of some shit government to tell parents they can't do whatever they can do to save their child?

Who the fuck are these people?

The child isn't being harmed. If what the NHS says is true, the child is already dead. So is the NHS for real, or are they just lying? Are they just angry their diktat from Heaven isn't getting treated like the word of God?

 

[Mesh Gear Fox]

It's not just the government telling the family, it's the NHS physicians, the Spanish physicians, the American physicians and study authors who are all saying the same thing. When you're hearing the same thing on all sides, it may just mean something. These are all credentialed and experienced health care providers and not "goons".

This will not save him. Nothing will. Brain damage is permanent and irreversible. Things only get worse for him from here on in.

Is it the government's right to dictate his treatment? In my opinion yes, but I think you all know that and vehemently disagree with me. Sometimes you just have to know when it's time to stop and let him go.

 

[AnOminous]

Is it the government's right to dictate his treatment? In my opinion yes

And that's exactly why you're wrong.

I'm glad I don't live under your shit government.

 

[Enclave Supremacy]

What about the opinion of people who are specifically researching this specific disorder? They seem to think there is at least some clinical purpose in investigating this particular disorder, and are entirely willing to do it, and $1.7 million in funding is available to do this, and the parents of the child in question want to do it, but you think some people with no interest whatsoever in any of the actual people involved should have the ultimate choice.

You can't volunteer your child for clinical experimentation. What a bunch of villians the government is.

The child isn't being harmed. If what the NHS says is true, the child is already dead. So is the NHS for real, or are they just lying? Are they just angry their diktat from Heaven isn't getting treated like the word of God?

It really just seems like you have a chip on your shoulder against governments frankly.

No, I don't imagine that whatever doctors who are overseeing Charlie's case are that philosophically invested in ensuring the authority of the NHS and Big Government. I reckon that they're probably just doctors doing their jobs.

Or do you really believe that some cabal has taken a personal affront against this one child because their like the Party from 1984 and are purely obsessed with power for its own sake? Because everyone views everything through Authoritarian/Libertarian political lenses at-all times. Sounds like a MovieBob level of conspiracy thinking.

And that's exactly why you're wrong.

I'm glad I don't live under your shit government.

That's fine. We'd rather not see this here:

Spoiler

http://metro.co.uk/2017/06/12/baby-...healing-instead-of-medical-treatment-6703599/
http://www.independent.co.uk/news/s...pray-instead-call-911-ambulance-a7512461.html
http://time.com/8750/faith-healing-parents-jailed-after-second-childs-death/
http://www.nbcphiladelphia.com/news/local/Ella-Foster-Faith-Healing-Death-412443963.html

Or however many hundreds of times this has happened because some uneducated retards have diktat over someone's medical care.