[url]http://www.bbc.co.uk/news/uk-england-40708343[/url]
[quote]The parents of terminally-ill baby Charlie Gard have ended their legal challenge to take him to the US for experimental treatment.
A lawyer representing Chris Gard and Connie Yates told the High Court that "time had run out" for the baby.
Grant Armstrong said Charlie's parents had made the decision because an American doctor said it was too late to give him nucleoside therapy.
"The parents worst nightmare have been confirmed", Mr Armstrong said.
He told the presiding judge Mr Justice Francis that US neurologist Dr Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week.[/quote]
They could've given him at least a chance, despite the brain damage. While I understand the rationale of the medical panel, and even the ethics board, now his parents will never know if it would've worked at all, and to be honest I kind of agree that it was probably too late so long after the diagnosis was made.
Terminally illl patients should be allowed to have experimental procedures if there's even a chance it will save their life. I can understand the concerns if normal medicine would suffice, but when you have nothing to lose and everything to gain, what's the point in holding them back?
[QUOTE=Zonesylvania;52502076]They could've given him at least a chance, despite the brain damage. While I understand the rationale of the medical panel, and even the ethics board, now his parents will never know if it would've worked at all, and to be honest I kind of agree that it was probably too late so long after the diagnosis was made.[/QUOTE]
There is a pretty thorough explanation on the hospital's website of why they reached the decision they did
[url]http://www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case[/url]
[quote]Charlie’s brain, muscle and ability to breathe are all severely affected. In addition, Charlie has congenital deafness and a severe epilepsy disorder. Charlie's heart, liver and kidneys are also affected.
Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided.
Charlie's eyelids cannot stay open and his eyes point in different directions because of muscular weakness. Charlie’s retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age. Eyesight is not something you’re born with, it develops over time.
...
One of the factors that influenced this decision was that Charlie’s brain was shown to be extensively damaged at a cellular level. The clinician in the US who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred.[/quote]
The baby wouldn't have had any semblance of a quality of life, this was the better thing to do.
[QUOTE=Trekintosh;52502084]Terminally illl patients should be allowed to have experimental procedures if there's even a chance it will save their life. I can understand the concerns if normal medicine would suffice, but when you have nothing to lose and everything to gain, what's the point in holding them back?[/QUOTE]As of right now, nucleoside therapy is just expensive pallative care with no real guarantee of improvement or stability. And the mutation with Charlie Gard hasn't been tested with nucleoside therapy, either (All 18 patients treated with nucleoside bypass had a mutation with the TK2 gene, Charlie's is a rarer mutation, RRM2B). And researchers have not released results yet on the outcomes/ongoings with the patients treated.
[url]https://www.statnews.com/2017/07/17/charlie-gard-treatment/[/url]
[url]https://mitochondrialdiseasenews.com/2017/07/19/nucleoside-therapy-explained-why-doctors-debate-treating-charlie-gard/[/url]
As precious as human life is, if the doctors can conclude the kid is a vegetable that's past the point of repair even if the original problem gets fixed then spending the resources on keeping it alive would be a waste.
Some tabloids are on the verge of calling the doctors enemies of the people over this. The hospital has already received death threats
[url]http://www.dailymail.co.uk/news/article-4723092/Charlie-Gard-s-fate-decided-TODAY.html[/url]
Not to be high and mighty, and I'm not a parent myself, but if your beautiful baby was born with a deadly illness and there was even one possible chance to save it, wouldn't you fight with all your heart? It was wrong that this happened, and if I ever become parent, the possibility of this type of legalistic garbage ending my child's life is truly disturbing.
[QUOTE=antair;52502313]Not to be high and mighty, and I'm not a parent myself, but if your beautiful baby was born with a deadly illness and there was even one possible chance to save it, wouldn't you fight with all your heart? It was wrong that this happened, and if I ever become parent, the possibility of this type of legalistic garbage ending my child's life is truly disturbing.[/QUOTE]
No I wouldn't fight if my child was in this condition - I wouldn't want it to suffer for the duration of its life.
[QUOTE=antair;52502313]Not to be high and mighty, and I'm not a parent myself, but if your beautiful baby was born with a deadly illness and there was even one possible chance to save it, wouldn't you fight with all your heart? It was wrong that this happened, and if I ever become parent, the possibility of this type of legalistic garbage ending my child's life is truly disturbing.[/QUOTE]
My parents faced a similar decision over my younger brother and specifically asked if the treatment would give a realistic chance for a proper life or just enable him to become aware and understand his suffering before an early death. In his case it did give him a chance for a proper life and he is alive and well today but had the prediction been a short life of suffering they would have spared him that. This is how the doctors viewed it (helped that my parents are doctors) and perhaps helps explain the logic.
[QUOTE=antair;52502313]Not to be high and mighty, and I'm not a parent myself, but if your beautiful baby was born with a deadly illness and there was even one possible chance to save it, wouldn't you fight with all your heart? It was wrong that this happened, and if I ever become parent, the possibility of this type of legalistic garbage ending my child's life is truly disturbing.[/QUOTE]
My cousin was born prematurely, had everything under the sun wrong with her, on top of having downs. She was never 'supposed' to make it. She's 18 now with the brain of a baby in the womb, deaf, can not and will not ever communicate, and has no motor function and basically hasn't left her bed in 18 years. This isn't living, it's just existing, not to mention the extreme emotional and financial burden on her family. There isn't a way to talk about this without sounding like an insensitive prick, but sometimes you have to let go, and this is what can happen when you don't.
[QUOTE=Bob The Knob;52502285]Some tabloids are on the verge of calling the doctors enemies of the people over this. The hospital has already received death threats
[url]http://www.dailymail.co.uk/news/article-4723092/Charlie-Gard-s-fate-decided-TODAY.html[/url][/QUOTE]
Of fucking COURSE it's those fucking fearmongering hateful cunts. There's no low they won't fucking stoop to to sell a few more papers.
[QUOTE=antair;52502313]Not to be high and mighty, and I'm not a parent myself, but if your beautiful baby was born with a deadly illness and there was even one possible chance to save it, wouldn't you fight with all your heart? It was wrong that this happened, and if I ever become parent, the possibility of this type of legalistic garbage ending my child's life is truly disturbing.[/QUOTE]
You're correct. It's the selfishness of the parents vs. the quality of life of the child.
I would rather my child have a good life (or at that age, have to 'pull the plug' ) than be a vegetable requiring expensive medication and constant care, with probably a shitload of pills to keep the pain to a minimum, all simply because "but my kid tho". They'd never have a normal life, would probably be filled with plenty of pain and misery.
As someone who has a younger brother who was born with a Brain Tumor, and spent easily five years going in and out of Great Ormond Street hospital every weekend to see him, I understand why these parents fought so hard for their baby. It's something that shouldn't happen to anyone, no life-style choice influences that your baby be born so frail and weak and utterly fucked at a chance of a normal life. Though I was in all likelihood too young to understand the stress that my parents went through when my brother was suffering, I saw other parents they'd met in the Ward. And their kids had it far worse than my brother. Most were supportive, and others were in the same sort of denial that I imagine Charlie's parents were in. They thought their kid born with all manner of ailments could ever lead a normal life, I distinctly remember one parent shouting at Doctors and Nurses and trying to rip the drip-feeds out of their babies body, because they thought he'd get better. It does horrible things to a parent, and I truly feel for the Gards in this. I sometimes don't realise how lucky I am now, that my brother can walk and talk like a normal human being now, and the only sign he spent all of his childhood in a Hospital is a scar on the back of his neck and a slight squint. It could've been so much worse, I could have not had a brother right now.
A bit of a ramble, sorry. But I can relate to this news, and all that it is is Sad.
I've been following this story since it started and while its an undeniably tragic situation. It was fairly obvious that nothing could be done for the baby pretty early on.
There are conditions that they can recover from but his wasn't one, there was no medical basis for keeping him alive and as horrible as it sounds the parents should have acknowledged this instead of turning this into a public shouting match with the finest childrens hospital in the country. Who did all they possibly could for him.
[QUOTE=Bob The Knob;52502285]Some tabloids are on the verge of calling the doctors enemies of the people over this. The hospital has already received death threats
[url]http://www.dailymail.co.uk/news/article-4723092/Charlie-Gard-s-fate-decided-TODAY.html[/url][/QUOTE]
Considering the tabloids love to throw around "ENEMIES of the PEOPLE!!!!111!!" whenever anyone does anything not supported by the fucking BNP, I think it's time we called for them to be shut the fuck down.
They don't pay attention to any of the current requirements on reporting, when forced to apologise you get a 2pt three word "we're sorry (not)" at the bottom of a page full of other things to catch the readers eye instead.
[quote]Outside court, Charlie's Army campaigners reacted angrily and chanted, "shame on you judge" and "shame on GOSH".
Falling to the ground, one female supporter said: "He had a chance and you took it away."[/quote]
No. The fact of the matter is this kid [i]never[/i] had a chance, and these people need to learn to accept that and stop being so overly-emotional. They don't know what they're talking about.
You don't get better from MDDS. If you're "lucky", you'll survive to adolescence. He has irreversible brain damage, he has no muscle mass to speak of, he can't move his arms or legs, he's both blind and deaf, he can't even breath normally without a ventilator. Keeping him on life support is ridiculous. That isn't living, it's existing. Even if he could be kept alive indefinitely, what sort of quality of life do they honestly think he'd have in the future?
[QUOTE=Govna;52502972]No. The fact of the matter is this kid [i]never[/i] had a chance, and these people need to learn to accept that and stop being so overly-emotional. They don't know what they're talking about.
You don't get better from MDDS. If you're "lucky", you'll survive to adolescence. He has irreversible brain damage, he has no muscle mass to speak of, he can't move his arms or legs, he's both blind and deaf, he can't even breath normally without a ventilator. Keeping him on life support is ridiculous. That isn't living, it's existing. Even if he could be kept alive indefinitely, what sort of quality of life do they honestly think he'd have in the future?[/QUOTE]
people are using this as a knock against "socalism" because "SOCIALISM DECIDES FOR YOU IF YOUR ChILD LIVES OR DIEs!" not joking
Cue uneducated conservative shitters using this as an excuse to attack the NHS
I encourage everyone (especially the Americans in the thread who might not know the precise details of this case) to read the statement put out by GOSH:
[url]http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017[/url]
Paying particular attention to paragraphs 9 & 10.
Here's paragraph 10 for ease of viewing (with a particularly pertinent bit highlighted),
[IMG]https://pbs.twimg.com/media/DFiH8dFXYAEwC6L.jpg:large[/IMG]
[QUOTE=Trekintosh;52502084]Terminally illl patients should be allowed to have experimental procedures if there's even a chance it will save their life. I can understand the concerns if normal medicine would suffice, but when you have nothing to lose and everything to gain, what's the point in holding them back?[/QUOTE]
I disagree: in this case it was inappropriate. The treatment offered would not have 'saved' Charlie Bard or give him a 'normal' life. It may have slowed the degeneration of the muscle tissue but it would not have reversed the brain or organ damage.
The only benefit treating Charlie would have is advancing medical research but doing so would prolong his pain. Furthering medical research at the expense of the patient is IMO unethical.
My view is the same as GOSH's position (set out in paragraph 12 of the statement I posted above):
[QUOTE]GOSH is a tertiary referral centre and a centre of research excellence. It celebrates and enthuses about gene therapy and experimental treatment of all types. But it also believes in its patients as people. The hospital strives to work with children and parents to strike a balance of treatment benefits and burdens that combines evidence and compassion. Where that balance falls ethically in favour of pioneering treatment, GOSH shares each family’s excitement at the journey that follows. GOSH believes that novel therapies are best provided in the context of formal clinical trials. The hospital does not treat its most vulnerable children simply because it can and [B]on no account does it treat them purely because novel treatment furthers GOSH’s research.[/B] [/QUOTE]
[QUOTE=OmniConsUme;52503002]people are using this as a knock against "socalism" because "SOCIALISM DECIDES FOR YOU IF YOUR ChILD LIVES OR DIEs!" not joking[/QUOTE]
I know. I've seen it on Facebook already. They're a bunch of degenerates, the same sort who were ranting about Obamacare being a socialist death panel conspiracy and who want it repealed.
What I love is that they're so stupid and indoctrinated with that nonsense they honestly cannot see the ethical sense behind this decision, never mind the medical and scientific sense. The kid isn't going to get better. It doesn't matter what kind of healthcare system your country has. MDDS is not curable. At least with a universal, "socialist" system people can actually get decent access to see doctors in the first place and don't have to pay an arm and a leg for assessment and treatment. Medical debt is still one of the leading causes of bankruptcy in the United States.
This is pathetic.
The child has absolutely zero possibility for any kind of viable human experience.
This entire campaign is about simply using the baby as some kind of experimental device for future medical research.
I can't judge the parents because I haven't followed this thoroughly. But it is completely unethical to force a brain dead child to be ventilated purely because of the idea that it is a living child. The child has no experience of being alive. I don't know what joy people get in keeping this child alive in such a way. It doesn't make sense to me at all.
I'm very sorry the parents had to go through such a horror, but it's not a fight I can get behind.
I am actually struggling to comprehend how American doctors can be this reckless to give false hope.
[editline]25th July 2017[/editline]
[url]http://www.bbc.co.uk/news/uk-england-london-40691478[/url]
this is fucking disgusting and has reduced my faith in humanity so low...
I'm not a parent (as of yet), but I can't imagine the heartbreaking tragedy his parents are currently going through...
If it was me, as painful as it will be, I think I would make the decision of letting the child slip away rather that prolonging their lifespan to living a vegetable life full of pain, medication and bed rest.
The awful thing about this, is this has now tainted one of the greatest hospitals in the world.
Bad press on such a scale where Donald Trumps and the Pope are underplaying the fact that they were given false hope is absolutely incredible.
People think they're experts on how to deal with situations like this and have no experience yet think it's ok to disgrace the very people who really know what they're talking about.
You can all call people warriors and cry in a campaign but nobody has actually put thought into the individual and what is actually the right decision. The only thing people think that matters is their own experience and their own effort. I bet those who pooled the 1.5 million donation, probably feel they are doing more than the very people looking after this child.
And now the parents want to take the child home, while it's possibly in agony and on the verge of death.
[QUOTE=Instant Mix;52502473]You're correct. It's the [B]selfishness [/B]of the parents vs. the quality of life of the child.
I would rather my child have a good life (or at that age, have to 'pull the plug' ) than be a vegetable requiring expensive medication and constant care, with probably a shitload of pills to keep the pain to a minimum, [B]all simply because "but my kid tho"[/B]. They'd never have a normal life, would probably be filled with plenty of pain and misery.[/QUOTE]
A fucking terrible choice of words. I can't possibly grasp what they must be going through right now. They had a hospital tell them that their son isn't going to live and that they where going to stop giving him medical treatment. That is horrifying regardless of circumstance or justification. You don't have to agree with what the the parents are doing to see that they are broken and desperate just looking for a way for their son to survive.
Your "but my kid tho" comment really shows what an incredible disconnect and total lack of empathy you have with this whole situation.
[QUOTE=AK'z;52503809]I am actually struggling to comprehend how American doctors can be this reckless to give false hope.[/QUOTE]
Personal gain. As was noted by that GOSH assessment, Dr. Hirano had a financial interest in the NBT compounds he proposed prescribing to Charlie. On top of that, this was a chance for him to try out an experimental treatment. Being such a high-profile case, it would get his name out there and make him something of a celebrity for a short while. Plus in the future he could use it as an example of, "Look at how much of a humanitarian I am," which would probably be good for business by bolstering his reputation with patients and the general public.
It's largely a matter of personal gain. Money's a factor, but so is prestige and attention. I also think there was genuine interest on his part to try this treatment on Charlie just to see what would happen to him. It could've been an interesting research opportunity if he'd been allowed to go ahead, but it honestly made no ethical sense to allow him to. Charlie's not a lab rat.
[QUOTE=BusterBluth;52505101]A fucking terrible choice of words. I can't possibly grasp what they must be going through right now. They had a hospital tell them that their son isn't going to live and that they where going to stop giving him medical treatment. That is horrifying regardless of circumstance or justification. You don't have to agree with what the the parents are doing to see that they are broken and desperate just looking for a way for their son to survive.
Your "but my kid tho" comment really shows what an incredible disconnect and total lack of empathy you have with this whole situation.[/QUOTE]
Yeah but they don't have to start a national hate campaign against the hospital and doctors that have done everything they can for them.
It's sad that their baby died but these people can fuck off now.
One of the most existentially depressing cases I've ever seen. I can't imagine the pain these parents feel now, or the horror and agony they'll have to carry with them over this debacle for the rest of their lives. This is so wrong.
[QUOTE=Chonch;52509377]One of the most existentially depressing cases I've ever seen. I can't imagine the pain these parents feel now, or the horror and agony they'll have to carry with them over this debacle for the rest of their lives. This is so wrong.[/QUOTE]
there is absolutely nothing people could have done differently.
you can't just send this child to some mad scientist to pump full of drugs that won't have any effect when the child has already been affected by the disease.
and now that the child is officially palliative, you can't just simply send the child home on a ventilator and rely on two clueless people to operate it.
This is a case where people are not understanding why professionals make choices and have thought this through.
If there was malpractice, then I'd understand, but I don't see anything where the hospital staff did any wrong. The only people who have done wrong, is the idiot doctor saying "my drugs have the chance to completely heal your child", which is bullshit and he knows it.
And also the public for condemning the staff for their fantastic work that they continue to do year in year out.
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