Saving Charlie Gard

Thunderian

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Poor Charlie. And his parents look like they're going through hell. Sometimes I wish we were living in caves, so parents wouldn't have to go through things like this, and these kinds of dilemmas wouldn't exist. Charlie would already be at peace, his parents would be allowed to bury him and grieve, and the state wouldn't have anything to do with it.

Saving Charlie Gard

wsj.com/articles/saving-charlie-gard-1499467205


Parents of Charlie Gard, Chris Gard and Connie Yates, in London on April 5. Photo: Chris J Ratcliffe/Getty Images

Charlie Gard, an 11-month old British child with a rare genetic disease, is today the most famous baby in the world. For all the wrong reasons.

Even as he remains on life support at a British hospital, he has attracted the attention of the President of the United States, the pope, the British courts and the European Court of Human Rights. All because his government has backed medical experts who say the experimental treatment offered by hospitals abroad—treatments his family hopes to try and is willing to pay for themselves—would only prolong his suffering.

On Friday came news that the hospital asked for a new court hearing after researchers at two hospitals abroad offered “fresh evidence” on experimental treatments for the baby’s condition.

It may be that the experts the British and European courts invoke are right, that even with treatment Charlie won’t live much longer than he might with new interventions. But it’s not their decision to make. Or shouldn’t be.

Charlie’s mother says the hospital won’t allow her and her husband to bring their boy home, meaning that if he is to die, it will be with the hospital and not at home with those who love him. Which raises a question: Whose baby is Charlie, anyway—his parents’ or the state’s? In this delicate case, Britain’s national care system has elevated technical expertise over parental love.

Europe is much further along than America in its aggressive secularization and single-payer health-care control. Those values and priorities are on prominent display here, with an infant’s court-ordered guardian invoking “quality of life” as a reason for not allowing his parents to try experimental treatment.

Precedents matter when a society is confronted with these dilemmas. If the courts prevail in Charlie’s case, it isn’t so difficult to imagine another court ruling that a child with severe Down Syndrome or some other genetic disease also doesn’t have the right quality of life. Who decides? Our vote remains with the parents.
 

Haich

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This is heartbreaking, I can't believe they won't allow Charlie's parents to make this decision alone. Why are the hospital interfering?

It's not the doctors that have to live with the guilt of not attempting to save their son's life. I pray they do get the go ahead, those parents deserve the right to exhaust all avenues for their son before turning of his life support
 

justjess

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It's a complicated situation. The doctor in USA said that it most likely wouldn't be effective. The child is in pain and suffering. Brain dead with no hoped of recovery. This is not and should not be about the parents wishes or the states, it should be about what's best for the child and from everything I've seen the courts did focus on that.

Idk why they won't release him to die at home, I don't even know if that's true. And that's the only part of the story that is concerning imo.

It isn't like we don't have similar sticky situations here in the US, courts have had to intervene to pull life support here as well.

And your right the Drs don't have to live with the guilt, because this has been going on for months and they've already gone above and beyond to save this baby.
 

Haich

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The thing is as a parent, I have to sympathise with their dilemma. Everyone here would most probably attempt the same, even if it's a 20% chance of prolonging your child's life, you would do it.

I get that the doctors in the US have stated it's unlikely to aid Charlie's condition but I do believe the ultimate decision is to be with the parents. Some would say it's selfish of them to prolong his suffering but we can't imagine the grief and stress they are going through. I think this was their first child, I may be mistaken but I vaguely remember hearing it on the BBC. This makes it all the more a sensitive issue, it's complicated and I think more avenues should be explored for children like Charlie
 

justjess

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He's been in the hospital for nine months. They have tried pretty much everything.

Of course I sympathize and it's heartbreaking. I get it. What I can't sympathize with is politicians who have nothing to do with it getting involved to suit their own agendas. That kind of thing is only making this harder on the parents in the long run.

Look trump has millions of sick children who are USA citizens he is content to let die. The FDA does not provide experimental unapproved treatments to its own citizens let alone for free - we fought a year trying to get approval for my dad and were denied, he died a couple months later, if it Had been approved we would have been responsible not only for the cost of the drug but for any associated treatment costs - unapproved treatment means not covered by insurance and FDA isn't giving out freebies.

All of a sudden there's viral story in the media that panders to the very powerful pro life anti liberal faction of this country (the people who got trump elected) and all that's out the window?

I sincerely believe the hospital is trying to do what's best for this kid. I also sincerely believ the parents are trying to do what's best for the kid. It's a rough situation.
 

Haich

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There's not enough funding at all for many clinical trials that could save millions of people

True many politicians are only on board with Charlie's case to gain notarity for helping his family. Anything to make them look good I guess

The hospital is acting in the best interest of Charlie however I think their insistence to turn his life support is concerning. I know the prognosis isn't good and the poor boy will probably die eventually, but the parents know this hence why they want to try and see what can be done

He's almost 1 so clearly the hospital has exhausted its avenues but this case has raised as huge discussion

When does the NHS' responsibility override parental responsibility?
 

justjess

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I would assume the same place the courts get involved here.. when a child is suffering and the state feels the parents aren't working in the child's best interest.

It happens here too and we don't have socialized medical.
 

Haich

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Im of the opinion that parental responsibility usually outweighs a doctor's responsibility with regards to a child or baby. However I do think parents hold on to a shred of hope and prolong the suffering of their children by trying to explore very experimental and weak avenues to medicate their kids

Ultimately it's a question of morality, do we let the parents make these decisions for their kids and ignore the suffering of the child, or do we intervene?

I do think Charlie's parents are placing a lot of hope and importance on these doctors, I don't blame them I'd probably do the same. I think the courts and hospital should try and find a way of flying those doctors in from America to see if there's anything that can be done for Charlie. Not just Charlie, any patient with an incurable or detrimental illness should receive the help they need

The British tax payer contributes tirelessly to the NHS health service, technically its only free for people out of work or children; everyone else pays a chunk of money from their wages towards the NHS and we must have more of a say how funding is used in our health service
 

justjess

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The FDA releasing an unapproved experimental drug for FREE breaking all its own rules.. isn't about funding. It's about our politicians making exceptions to win political points and not giving two shits when it isn't going to get them good headlines.

They should be doing that for EVERYONE. Not just when it suits them for votes.
 

Haich

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I can't really comment on the FDA I'm in the UK but I share your anger at the irresponsible disparaging of some drugs
 

TMT

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It is selfish to keep this soul alive. It has no agency in this world and is held hostage to torment, hell on earth. I understand that it's tough on the parents, but they are being selfish. This is sickening.

I hope the laws change because if I develop Alzheimers or any terminal illness really, I would want to die peacefully with beautiful drugs. Otherwise if I do get Alzheimers, I'll have a date with a gun in my mouth, and I don't want to have to go out that way, but better quick than suffering.
 

Sunshine

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It will be interesting to see which way the court's decision goes. I can't see The State ruling against itself, abridging its own power to boss around us "little people." And yet, the parents' rights to their children is something so basal, so sacrosanct, it's one of the few areas in our lives left where the govt.'s authority is not automatically conceded.

This is different than the Terri Schiavo case, for two reasons. First, She was an adult, not a minor in the custody of her parents. Rather, she was in the custody of her husband, the father of their 3 children, who had endured many years in the purgatory of his wife's vegetative state. (Not to mention the hospital bills.) Legally speaking, he had a more substantial right to choose taking her off life support, than the parents who wanted to prolong her life. It wasn't that big of a deal until a-hole governor Jeb Bush stepped in, in I feel was a huge overreach of his authority. He should have let it remain in the courts and kept his nose out of it.

Again, the Charlie Gard case is a contest directly between the parents and the state. We all know that, even when the state has the best of intentions, their programs and decisions often fail the children they are designed to protect. Foster care, juvenile detention centers, public schools--every one of these in almost every state (and Great Britain too) is racked with scandals and controversies and stories of injury and neglect of their charges. I, for one, don't trust the state to make the best decision for Charlie any more than I trust the FDA, the EPA or the CIA.

If the court decides in favor of the state, and against the parents, it will be a dark day for individual liberty, no matter what country you live in. They have been chipping away at these liberties for a long while now, and such a decision in this case would be a permission slip for the govts. around the world to impinge even further on individuals' rights.

I've seen a few of you whining about "pro-lifers" in this thread, and I must insist that you try to look past that. Whether you are "pro-life" or "pro-choice," you should be rooting for the parents, lest we all have our rights to choose what we do with our bodies, and our children and our health care, trampled on in the very near future.
 

justjess

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There was one mention of pro lifers which wasn't even about pro lifers but instead about the politicians involving themselves in this to pander to the pro lifers when those same politicians don't give a shit about life until it affords them votes, don't give a shit about the kids in their own country dying because of no health care Or food etc.

No one was bitching about pro lifers - it was MY comment and I wasnt bitching about pro lifers.

The state already intervenes with parents medical decisions if the doctors think they are not acting in their child's best interest. Happens in the USA too, it's called medical neglect and while it's typically parents refusing or not providing medical care if the medical care provided was hurting the child it would apply just as much.
 

Devine

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whenever you accept "help" from the government you trade in some of your rights and freedoms for it. i do think the parents here are wrong to want to keep him alive.
 

TMT

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This is about individual rights, the right for Charlie not to suffer. His parents can't accept that he is dying, and want to make him a medical experiment. Even if by some small chance they can save his life what will be the quality of that life?

Keeping him alive is child torture, and you guys are against that right?
 

Devine

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kids have to belong completely to parents, legally, otherwise they may belong to the state and who wants that?
over riding a parent's right to choose a kids medical care is a very slippery slope. hello, compulsory vaccines!!!
 

TMT

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kids have to belong completely to parents, legally, otherwise they may belong to the state and who wants that?
over riding a parent's right to choose a kids medical care is a very slippery slope. hello, compulsory vaccines!!!
Well then D, I guess it's ok to have sex with your kids right? If they belong completely to the parents?
 

justjess

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We already interfere with parents medical choices for good reason. There is such thing as medical neglect.

Children aren't their parents property to do with as they please. That idea went put the window where it belongs decades ago. That doesn't mean they belong to the state either.
 
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