Support NeoGAF

[Kadin]

7/24/17 Update:

update: The parents have ended their legal fight so it doesn't look like anything else will happen

http://www.bbc.co.uk/news/uk-england-40708343

I just don't understand how this type of decision can be made by a court system (from doctors recommendations) and his parents not allowed to do what they want. I live in the US so I'm pretty uneducated on the healthcare system in the UK but this just seems so terrible.

Hopefully this isn't old, I searched a good bit before posting.

For months and months, Charlie Gard's parents have been fighting for his life.

The 10-month-old has a rare genetic condition and brain damage that has robbed him of his ability to move his arms and legs, eat or breathe on his own. He has been connected to machines to help keep him alive.

After a heartbreaking court battle, Charlie's parents must now let him go.

The European Court of Human Rights declined to hear the case Tuesday, upholding previous court rulings to let Charlie die. Doctors at a British hospital had said that nothing more could be done. Charlie's parents had said there was an experimental treatment in the United States they had not yet tried. But the courts agreed that Chris Gard and Connie Yates must say goodbye to their son.

The parents told the Daily Mail that their son's life support will be disconnected Friday but that he is not permitted to leave Great Ormond Street Hospital for Children in London, meaning he cannot die at home.

”We know what day our son is going to die and we don't even get any say in what happens to him," Gard recently said through tears, according to the tabloid.

More at the WP story here.

 

[grumble]

What I find most disturbing about this is that the parents kept tormenting him when it became clear that he was a goner. People don't even do that to animals. Why children?

 

[Earthstrike]

I wouldn't fathom a decision where they allow a child to persist. Your basically dooming a brain to live in what is basically an uncontrollable husk. That would be brutal, unequivocal torture. Most people accept the idea of kids being taken away from parents if they are living in horrid living conditions. I can't imagine people looking at this and saying "yeah, he should be kept alive, even though all available data points to this being an incredibly torturous thing to put a human through.

 

[Ryuuroden]

So the parents wanted to torture him cause emotions.

 

[kirblar]

Yeah, this is the right call. It's unfortunate that it had to be done this way and that the parents couldn't understand what they were doing to their child.

 

[Frozenprince]

What I find most disturbing about this is that the parents kept tormenting him when it became clear that he was a goner. People don't even do that to animals. Why children?

Because there is nothing, ever, on this earth more painful than losing your child.

If you were a parent you would understand, I don't agree with their choice, he was hurting and they had to let go.

But the idea of letting your child die is worse than your own death, it's hell.

This will haunt both of them for the rest of their lives, I feel immense sympathy for them.

 

[jaekeem]

Agreed with everyone saying this was the right call.

Still, I sympathize with the parents. What an awful situation.

 

[ugaboga232]

This would (or at least should given what my ethics seminar professors said) also happen in the US as well.

 

[Impeccable]

It's the right call. It sucks, but it's right.

Burden on everyone involved from the healthcare facilities to the parent's mental state to the child itself.

 

[.JayZii]

Hopefully the parents can eventually see that this was the merciful thing to do. Doesn't make it easy, but still.

 

[adj_noun]

The story makes more sense when you realize they're holding onto hope for a cure.

Charlie's mother wrote on a GoFundMe page several months ago that she and Charlie's father had new hope:

After endlessly researching and speaking to Dr's all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn't been tried on anyone with his gene before (he's only number 16 in the world ever reported) but it's had success with another mitochondrial depletion syndrome called TK2 which is similar — it's helping children to get their strength back and live longer! We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain.

In a ruling in April, Justice Nicholas Francis of the Family Division of the High Court of Justice wrote that there was “unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage.”

“Transporting Charlie to the USA would be problematic, but possible,” he added. “Subjecting him to nucleoside therapy is unknown territory — it has never even been tested on mouse models — but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”

 

[Con Con]

Sadness and hurt no matter what.

 

[Azuran]

At some point these parents need to accept their kid is never going to be better. I'll even argue the kid is already dead from a standpoint considering he can't even do vital actions like breathing by himself.

Keeping him alive is just torture at this point.

 

[JeTmAn81]

Came into this thread expecting support for a government denying parents a last-ditch chance to save their child's life. Never change, GAF.

Spoiler

Please change, GAF.

 

[Joe Condor]

I just don't understand how this type of decision can be made by a court system (from doctors recommendations) and his parents not allowed to do what they want. I live in the US so I'm pretty uneducated on the healthcare system in the UK but this just seems so terrible.

Hopefully this isn't old, I searched a good bit before posting.





More at the WP story here.

You don't believe in mercy killing?

 

[ST2K]

Guys, there's an experimental treatment in the US that the parents have the money for. The government is not only yanking life support, but preventing the parents from taking their own child to the US for further help.

That's heinous and terrifying.

 

[n00bsauce87]

I'm curious if they will be willing to donate their baby's organs.

 

[theWB27]

Because there is nothing, ever, on this earth more painful than losing your child.

If you were a parent you would understand, I don't agree with their choice, he was hurting and they had to let go.

But the idea of letting your child die is worse than your own death, it's hell.

This will haunt both of them for the rest of their lives, I feel immense sympathy for them.

I have a year ten old daughter and as a parent I would make the hardest decision of my life because I know that my kid is being kept alive for my selfish gratification.

That's an awful situation to keep a person in because I'm not strong enough to let them go.

 

[ugaboga232]

Came into this thread expecting support for a government denying parents a last-ditch chance to save their child's life. Never change, GAF.

Spoiler

Please change, GAF.

Guys, there's an experimental treatment in the US that the parents have the money for. The government is not only yanking life support, but preventing the parents from taking their own child to the US for further help.

That's heinous and terrifying.

The US would do the same thing. Just because someone is your child doesn't mean you get to ignore all of medical ethics. Family tends to push for experimental and harsher treatments even when the patient doesn't want it.

 

[B-Dubs]

Guys, there's an experimental treatment in the US that the parents have the money for. The government is not only yanking life support, but preventing the parents from taking their own child to the US for further help.

That's heinous and terrifying.

It's beyond experimental, they've never even tested it on mice let alone actual people.

I mean, I feel for these people, I really do, but at some point reality has to factor into the equation and they have to ask themselves if this is about them or their son.

 

[jaekeem]

Guys, there's an experimental treatment in the US that the parents have the money for. The government is not only yanking life support, but preventing the parents from taking their own child to the US for further help.

That's heinous and terrifying.

Seems to me like the diagnosis of the treatment being likely to actually help was almost categorically shot down by medical practitioners.

Just because you have the money doesn't mean you should be able to subject your children to almost any experimental treatment. Do you not see the terrifying possibilities of that?

 

[RazorbackDB]

You don't own your children, you are not allowed to do whatever you want with them, you do what's best for the child. I'm sure if this "experimental treatment" had any weight to it doctors would have taken another decision. Still I can't really blame the parents, hope is that last thing you lose and I can't even imagine what they must be feeling.

 

[BudokaiMR2]

I sympathize with the parents, but it's the right call to make.

One of the worst decisions I had to make in life was cutting off the life support for my mother after an accident left her brain dead. But I was the eldest son and it was my decision to make.

Leaving the kid in that sort of state just seems selfish to me and I'm glad the court ruled this way.

 

[Hydranockz]

Even IF they had the money to bring him to the US, could you imagine the guilt on that flight if transporting that boy became too strenuous on his life?

 

[Kadin]

I'm quite surprised at home many responses are so quick to say that this is the right call and the parents need to just let him go. How many of you are parents and have children? Is this something you honestly think you'd be able to do if you were in this situation?

But the bigger question I have, which prompted me to post this, how can a court order the child to stay in the hospital and not be allowed to leave so he can die at home as the parents wish? I assume the parents would require a lot of assistance to transport him to the US and that's what they're being denied... but it sounds like he's being ordered to stay there. How is that possibly okay?

 

[MMarston]

Guys, there's an experimental treatment in the US that the parents have the money for. The government is not only yanking life support, but preventing the parents from taking their own child to the US for further help.

That's heinous and terrifying.

But then what of the child? It's clear he's got next to zero chance he's going to get better.

I truly feel sorry for the parents, but in this situation, you can't just doom your kid to a life of actual living death for your emotional sake.

 

[kirblar]

I'm quite surprised at home many responses are so quick to say that this is the right call and the parents need to just let him go. How many of you are parents and have children? Is this something you honestly think you'd be able to do if you were in this situation?

But the bigger question I have, which prompted me to post this, how can a court order the child to stay in the hospital and not be allowed to leave so he can die at home as the parents wish? I assume the parents would require a lot of assistance to transport him to the US and that's what they're being denied... but it sounds like he's being ordered to stay there. How is that possibly okay?

One doesn't need to be a parent to imagine being in the kid's shoes. And those are the only ones that matter here.

 

[ugaboga232]

I'm quite surprised at home many responses are so quick to say that this is the right call and the parents need to just let him go. How many of you are parents and have children? Is this something you honestly think you'd be able to do if you were in this situation?

But the bigger question I have, which prompted me to post this, how can a court order the child to stay in the hospital and not be allowed to leave so he can die at home as the parents wish? I assume the parents would require a lot of assistance to transport him to the US and that's what they're being denied... but it sounds like he's being ordered to stay there. How is that possibly okay?

Because dying is not painless and the child's needs outweigh the parent's requests.

 

[Impeccable]

I'm quite surprised at home many responses are so quick to say that this is the right call and the parents need to just let him go. How many of you are parents and have children? Is this something you honestly think you'd be able to do if you were in this situation?

But the bigger question I have, which prompted me to post this, how can a court order the child to stay in the hospital and not be allowed to leave so he can die at home as the parents wish? I assume the parents would require a lot of assistance to transport him to the US and that's what they're being denied... but it sounds like he's being ordered to stay there. How is that possibly okay?

Father of a six year old daughter. I would let go, yes.

 

[Phrozenflame500]

In a ruling in April, Justice Nicholas Francis of the Family Division of the High Court of Justice wrote that there was “unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage.”

“Transporting Charlie to the USA would be problematic, but possible,” he added. “Subjecting him to nucleoside therapy is unknown territory — it has never even been tested on mouse models — but it may, or may not, subject the patient to pain, possibly even to mutations. But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”

Sounds fair, you're not going to dose a kid with all sorts of experimental medical procedures that won't even improve his condition. It's harsh but it sounds like it's the right call.

Not sure about the "can't leave the hospital" thing.

 

[Earthstrike]

I'm quite surprised at home many responses are so quick to say that this is the right call and the parents need to just let him go. How many of you are parents and have children? Is this something you honestly think you'd be able to do if you were in this situation?

But the bigger question I have, which prompted me to post this, how can a court order the child to stay in the hospital and not be allowed to leave so he can die at home as the parents wish? I assume the parents would require a lot of assistance to transport him to the US and that's what they're being denied... but it sounds like he's being ordered to stay there. How is that possibly okay?

Noone is arguing this is easy for the parents. I'm sure the people here who are parents as well as the ones who are not understand this is incredibly difficult on an emotional level for them.

It seems the treament option available in the U.S. was reviewed but was deemed to be unsuitable for a couple of reasons.
1. Never tested even on mice, let alone humans
2. Given the available body of medical science, could not possibly repair the brain damage that the child's brain had sustained.

 

[Miles X]

I'm quite surprised at home many responses are so quick to say that this is the right call and the parents need to just let him go. How many of you are parents and have children? Is this something you honestly think you'd be able to do if you were in this situation?

But the bigger question I have, which prompted me to post this, how can a court order the child to stay in the hospital and not be allowed to leave so he can die at home as the parents wish? I assume the parents would require a lot of assistance to transport him to the US and that's what they're being denied... but it sounds like he's being ordered to stay there. How is that possibly okay?

It'd be the hardest thing you would ever have to do. But Yes. Wouldn't you? Why would you want to let your child suffer in a such a horrific way?

 

[KernelPanic]

I made this kind of decision and I always wonder/regret it every day, just as my wife does what would have happened if I let him live.

There is no worse pain than losing a child and even if there is a 100% chance they will be a brain dead their whole life you always hope for a miracle somehow.

So yeah I totally feel for those parents, just like we were pressured to end it. It just never went down the legal route.

 

[Your Entertainer]

Guys, there's an experimental treatment in the US that the parents have the money for. The government is not only yanking life support, but preventing the parents from taking their own child to the US for further help.

That's heinous and terrifying.

This is a staggeringly ignorant opinion.

 

[Poor GRIMES]

So the parents wanted to torture him cause emotions.

What an incredibly simplistic, mean-spirited way to treat the loss of a parent's child. What is with this forum and its lack of empathy?

 

[Alienfan]

I'm not in anyway knocking the parents for fighting it, but it sounds like the courts made the right decision

 

[ST2K]

The US would do the same thing.

No.

Seems to me like the diagnosis of the treatment being likely to actually help was almost categorically shot down by medical practitioners.

Just because you have the money doesn't mean you should be able to subject your children to almost any experimental treatment. Do you not see the terrifying possibilities of that?

Any "terrifying possibiilties" of pursuing extraordinary treatment are child's play compared to the terrifying possibilities of a governmental organization deciding when enough treatment is enough and overruling the family's wishes to get treatment elsewhere.

 

[BudokaiMR2]

Sounds fair, you're not going to dose a kid with all sorts of experimental medical procedures that won't even improve his condition. It's harsh but it sounds like it's the right call.

Not sure about the "can't leave the hospital" thing.

I'm not an expert here but I would expect that for a kid who can't even breath on his own they aren't willing to just let him out of their care.

There is a very good chance they could end up causing him to suffer a fairly painful and horrible death outside of a proper medical facility. Instead of what I assume would be a gentle and painless one in the hospitals care.

 

[gai_shain]

I'm quite surprised at home many responses are so quick to say that this is the right call and the parents need to just let him go. How many of you are parents and have children? Is this something you honestly think you'd be able to do if you were in this situation?

This might be harsh to say but this is not about the parents.

 

[Kadin]

It'd be the hardest thing you would ever have to do. But Yes. Wouldn't you? Why would you want to let your child suffer in a such a horrific way?

At what percentage of the odds of an experimental surgery working does it then become okay for the risk versus letting them go? If there's a possibility, even slim, I'd like to think I'd do everything in my power to see if it could work.

 

[John Kowalski]

This might be harsh to say but this is not about the parents.

This is generally how i feel about it.

 

[Frozenprince]

This might be harsh to say but this is not about the parents.

But it is. You don't just get to divorce them from the situation like they mean nothing.

 

[Poor GRIMES]

This might be harsh to say but this is not about the parents.

The court already made the decision to stop putting that child's life on hold. He's gone now. However, the parents are now the ones that have to shoulder the burden of losing their child for the rest of their lives. Looking down on the parents and saying "aw gawrsh, you have feelings and shit, how dare you!" is such a pessimistic way to look at things.

 

[theWB27]

What an incredibly simplistic, mean-spirited way to treat the loss of a parent's child. What is with this forum and its lack of empathy?

Why is not letting emotion dictate decisions a lack of empathy?

 

[D4Danger]

At what percentage of the odds of an experimental surgery working does it then become okay for the risk versus letting them go? If there's a possibility, even slim, I'd like to think I'd do everything in my power to see if it could work.

you're looking at it from the point of view of the parents. people have the right to die with dignity. Treating the kid like a lab rat in the face of overwhelming medical advice is too much.

 

[Frozenprince]

Why is not letting emotion dictate decisions a lack of empathy?

Because life doesn't happen in a vacuum of logic and reason.

 

[Poor GRIMES]

Why is not letting emotion dictate decisions a lack of empathy?

Because placing judgment on the parents for a situation that you most likely haven't gone through or most likely never have gone through based on your own rationality and hindsight of the situation is poor taste?

 

[theWB27]

Because life doesn't happen in a vacuum of logic and reason.

And yet it still doesn't give one the right to say they lack empathy. Not letting your kid stay on support with 0 quality of life can absolutely be empathetic to the kids state and not your own.

 

[Zombie James]

It's hard not to sympathize with the parents' plight but it's also not hard to see the court made the right decision. At some point the most humane thing you can do is to let go. Poor kid.

 

[Joe Condor]

One of the more sadder thread backfires I've seen in a while