Charlie Gard RIP ..

[Thora]

R.I.P little Carlie

I dunno what chances of success the untested treatment in the US would have had but I don't blame his parents for hoping that it could have saved him, I'd feel the same in their position. I hope that medical science and care can develop and progress so that in future cases like this one don't have to happen. No parent should have to see their own child die, especially kids and babies.

It seems like "success" would have been a small chance (I think the American doctor was saying maybe 10%) of arresting the brain damage/prolonging his life. While GOSH were looking into it Charlie's condition deteriorated to the point where even prolonging his life wasn't in his interests. Unfortunately it seemed his parents believed that the treatment offered a cure and would turn him into a "normal, healthy child" - and that was what they clung on to.

 

[dylanredefined]

I know US medicine burns though more cash than the NHS, but I didn't know it burnt through more public cash, is that a fact?

Medicare/ Medicaid/ the Veterans Administration medical scheme. and various other schemes mean the US government spend 260 billion on health care which is 62% of the healthcare budget so you can nearly add the entire nhs budget on top of that for what they spend on private insurance. Okay, the population is 5 times as much still they don't get value for money.

 

[Thora]

Yeah, all of that, definitely. I wondered about editing what I said, to say something like the people around the family should have been making the point that carrying on wasn't in the baby's best interest (there may have been those conversations of course). I can understand the parent's desperation and, as you say, clinging onto hope in the shape of Hirano. I just think that they might have got tied into an adversarial process and maybe that stopped them having that really difficult discussion, to ask themselves the question 'is this in Charlie's best interest'?

I think a big problem is that the parents just didn't believe he was brain damaged, didn't believe the doctors were interpreting scans correctly, didn't believe he was suffering and didn't believe he couldn't be cured, so their idea of what is in his best interests was just no where near where the courts/medical team was.

 

[mather]

It seems like "success" would have been a small chance (I think the American doctor was saying maybe 10%) of arresting the brain damage/prolonging his life.

If it was me I'd take 10%, I mean that has to be better than 0% and death, right?

While GOSH were looking into it Charlie's condition deteriorated to the point where even prolonging his life wasn't in his interests. Unfortunately it seemed his parents believed that the treatment offered a cure and would turn him into a "normal, healthy child" - and that was what they clung on to.

Had they taken the treatment in the US and it did work, would he have lived, I mean even if he had a disability but could live a full life?

 

[Looby]

R.I.P little Carlie

I dunno what chances of success the untested treatment in the US would have had but I don't blame his parents for hoping that it could have saved him, I'd feel the same in their position. I hope that medical science and care can develop and progress so that in future cases like this one don't have to happen. No parent should have to see their own child die, especially kids and babies.

No child should have to be kept alive for months and months having seizures and apparently showing responses which indicate pain. That child was failed by a bunch of cunts exploiting his condition and his desperate parents for their own warped agendas.

 

[Wilf]

It seems like "success" would have been a small chance (I think the American doctor was saying maybe 10%) of arresting the brain damage/prolonging his life. While GOSH were looking into it Charlie's condition deteriorated to the point where even prolonging his life wasn't in his interests. Unfortunately it seemed his parents believed that the treatment offered a cure and would turn him into a "normal, healthy child" - and that was what they clung on to.

I should shut up, making criticisms of the parents - I don't want to do that, given what they've gone through. But ultimately, that's it ^. At some point the wider family and all those who were genuinely supporting them needed to accept that even the 'success' that was being offered wouldn't have been a good outcome for Charlie.

 

[High Voltage]

It seems like "success" would have been a small chance (I think the American doctor was saying maybe 10%) of arresting the brain damage/prolonging his life . . .

From reading all the attached "stuff" the chance of success seems to have been a lot closer to 0%

"Professor" Hirano had never conducted trials on even a GM mouse with the same condition at CG

He hadn't read the case notes

He hadn't examined the child

He had a financial interest in the drugs he was suggesting might work

If anyone needs to have a long hard look a themselves and their motives then it's "Professor" Hirano

 

[Thora]

If it was me I'd take 10%, I mean that has to be better than 0% and death, right?



Had they taken the treatment in the US and it did work, would he have lived, I mean even if he had a disability but could live a full life?

No, I don't think a life of being unable to breathe, move, see, hear, gain any pleasure or interaction from the world around you and possibily be in constant pain and unable to express it (or any other feeling), existing on a ventilator in a hospital is better than death. I wouldn't keep my own children alive like that.

 

[Dr. Furface]

If it was me I'd take 10%, I mean that has to be better than 0% and death, right?



Had they taken the treatment in the US and it did work, would he have lived, I mean even if he had a disability but could live a full life?

As I understood it, at best there was only a 10% chance that Charlie's condition might improve at all - but there was 0% chance he would ever have anything like a 'normal' healthy life even if the 'treatment' had been a success.

 

[Wilf]

I think a big problem is that the parents just didn't believe he was brain damaged, didn't believe the doctors were interpreting scans correctly, didn't believe he was suffering and didn't believe he couldn't be cured, so their idea of what is in his best interests was just no where near where the courts/medical team was.

I should shut up #2... I think there's a difference between actively believing something and refusing to accept a difficult truth. Again, I shouldn't keep going on about their decisions, they were facing the ultimate horror. But in the end, the mixture of their desperation and the horrible agendas of various leeches didn't produce a good outcome for Charlie. Poor kid.

 

[SpookyFrank]

I know US medicine burns though more cash than the NHS, but I didn't know it burnt through more public cash, is that a fact?

Per capita the US spends more taxpayer's cash on healthcare than the UK yes.

 

[mather]

No, I don't think a life of being unable to breathe, move, see, hear, gain any pleasure or interaction from the world around you and possibily be in constant pain and unable to express it (or any other feeling), existing on a ventilator in a hospital is better than death. I wouldn't keep my own children alive like that.

Ok, I thought that this American treatment at least offered the possibility that it could at least alleviate that and that Charlie would have a life, albeit with some brain development issues. Kinda like people with down's syndrome, they have a condition but can lead a life.

 

[Thora]

Ok, I thought that this American treatment at least offered the possibility that it could at least alleviate that and that Charlie would have a life, albeit with some brain development issues. Kinda like people with down's syndrome, they have a condition but can lead a life.

No, nothing even near that. And the American treatment was completely untested, even on animals, so the courts had to decide if the pain and distress of being transported to America to be experimented on with little to no hope of any improvement in his condition was in the baby's interests.

 

[mather]

As I understood it, at best there was only a 10% chance that Charlie's condition might improve at all - but there was 0% chance he would ever have anything like a 'normal' healthy life even if the 'treatment' had been a success.

What do you mean by a normal healthy life? With the example of my last post I mentioned people with down's syndrome, they don't have a fully healthy life but the live as do many others with a number of different disabilities. What I'm trying to say is that there is a big gap between having a fully healthy life and one that is of never ending, incurable pain where you are on permanent life support with tubes going into you. Was Charlie doomed to a life of the latter or could this treatment have saved him from that?

During this case, the British media were pretty shit in giving us details about this possible treatment in the US, what it would entail and the chances of success.

 

[gosub]

Ok, I thought that this American treatment at least offered the possibility that it could at least alleviate that and that Charlie would have a life, albeit with some brain development issues. Kinda like people with down's syndrome, they have a condition but can lead a life.

The symbiotic relationship between the bodies cells and the mitocondria that power them had broken down, the immune system is basically then trying to destroy cell function.

 

[Red Cat]

What do you mean by a normal healthy life? With the example of my last post I mentioned people with down's syndrome, they don't have a fully healthy life but the live as do many others with a number of different disabilities. What I'm trying to say is that there is a big gap between having a fully healthy life and one that is of never ending, incurable pain where you are on permanent life support with tubes going into you. Was Charlie doomed to a life of the latter or could this treatment have saved him from that?

During this case, the British media were pretty shit in giving us details about this possible treatment in the US, what it would entail and the chances of success.

There's detail on this thread and links to helpful articles. Try reading them.

 

[Thora]

What do you mean by a normal healthy life? With the example of my last post I mentioned people with down's syndrome, they don't have a fully healthy life but the live as do many others with a number of different disabilities. What I'm trying to say is that there is a big gap between having a fully healthy life and one that is of never ending, incurable pain where you are on permanent life support with tubes going into you. Was Charlie doomed to a life of the latter or could this treatment have saved him from that?

To have any quality of life I believe you need to be able to respond to and interact with the world and people around you and gain some pleasure from it. Charlie couldn't do that. If he did respond to anything it was in a way that suggested to various experts that he may be experiencing pain. His medical team believed he had suffered irreversible brain damage.

During this case, the British media were pretty shit in giving us details about this possible treatment in the US, what it would entail and the chances of success.

That's because no one knows - the American doctor selling this treatment didn't examine Charlie or read any of his medical records or the second opinions GOSH sought from other experts, and couldn't present any new evidence in court.

This was what Charlie's doctors believed about his condition:
" In GOSH’s view there has been no real change in Charlie’s responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judge’s finding, in April, that since his brain became affected by RRM2B, Charlie’s has been an existence
devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering."

 

[mather]

There's detail on this thread and links to helpful articles. Try reading them.

Shit, I have just read the link. What a vile and horrible disease. Poor Charlie didn't have a chance.

 

[gosub]

Charlie Gard parents announce death of 'beautiful boy' - BBC News

Poor little lad, 11 month old, Charlie Guard died after his life support systems were turned off.

There had been court cases between his parents and Great Ormond Street hospital about experimental treatment in America which his parents thought might extend his life, the hospital disagreed.

It must be very difficult when parents and doctors disagree, especially on such a critical issue.



A sad story.

Fair play for waiting until after the inevitable demise. Could have been a tasteless bunfight otherwise.

 

[Celyn]

The Americans generally have a really weird fucked up idea of what the NHS is and how it works. I have family over there, some of whom are very Republican. Trying to have a conversation with them about it is a mixture of bewilderment and frustration. Almost everyone I've ever spoken with over there about healthcare seems to have fixed and immovable ideas about the NHS that are just plain wrong. And they seem to be completely attached to their ideas in a way that's just odd. They really don't want to be told different. It seems very important to them to believe that the NHS is a terrible system that cannot work.

Well, people such as Stephen Hawking wouldn't have a chance in the UK.

 

[scifisam]

If it was me I'd take 10%, I mean that has to be better than 0% and death, right?



Had they taken the treatment in the US and it did work, would he have lived, I mean even if he had a disability but could live a full life?

The poor kid wouldn't have survived being transported to the US anyway.

GOSH were planning to give him the treatment themselves, so it's not like they were opposed to the idea of helping him. But then he got a lot worse and the parents refused to believe it. I have a lot of sympathy for them but none at all for those who manipulated them into prolonging their son's suffering. It's a sick, sick way to treat anybody.

 

[mather]

The poor kid wouldn't have survived being transported to the US anyway.

GOSH were planning to give him the treatment themselves, so it's not like they were opposed to the idea of helping him. But then he got a lot worse and the parents refused to believe it. I have a lot of sympathy for them but none at all for those who manipulated them into prolonging their son's suffering. It's a sick, sick way to treat anybody.

Agreed. Obviously nothing will return poor Charlie to his parents and they have the awful burden of having to live the rest of their lives without him but I hope that one day this horrible disease can be cured, properly that is and not by some quack from across the pond. It angers me that we could be spending so much more on medical science and research to prevent cases like this in the future but don't because money ends up being wasted on crap like backdoor privatisation of the NHS.

 

[agricola]

It's a sick, sick way to treat anybody.

It is, but its sadly not uncommon for people who have very serious illnesses to be targeted like that.

 

[Wilf]

The poor kid wouldn't have survived being transported to the US anyway.

GOSH were planning to give him the treatment themselves, so it's not like they were opposed to the idea of helping him. But then he got a lot worse and the parents refused to believe it. I have a lot of sympathy for them but none at all for those who manipulated them into prolonging their son's suffering. It's a sick, sick way to treat anybody.

Was this the same treatment as that proposed by Hirano? Not sure from my (very quick) searches.

 

[weltweit]

Per capita the US spends more taxpayer's cash on healthcare than the UK yes.

That being "per capita" is amazing. So in the US the spend is $9,000 per person per year in total and in the UK below $4,000 ..

 

[scifisam]

Was this the same treatment as that proposed by Hirano? Not sure from my (very quick) searches.

Yes, it was. A treatment called NBT. Check out the statement from GOSH on the first page of this thread.

 

[scifisam]

It is, but its sadly not uncommon for people who have very serious illnesses to be targeted like that.

True. My friend with advanced pancreatic cancer has been besieged with people urging her to try quack treatments, some of which aren't just expensive or pointless but would actually kill her. I mean genuinely that if she hadn't been strong enough to resist their persuasion she'd have already died a horrible death. It makes me furious.

 

[agricola]

That being "per capita" is amazing. So in the US the spend is $9,000 per person per year in total and in the UK below $4,000 ..

The total spend, yes. The public spend is the real clincher though; we pay less per capita per year for the entire NHS - hospitals, staff, PFI, treatments, equipment, dubious IT deals, overpaid managers and the rest - than they do just on medicare / medicaid (edit) which should perhaps indicate what a massive scam it is.

 

[Wilf]

Yes, it was. A treatment called NBT. Check out the statement from GOSH on the first page of this thread.

Ah, cheers (having some minor eyesight problems at the moment, it was a bit small/dense to read). Looks like there may have been some variations in the compounds given - particularly given Hirano's financial interests - but ultimately the same. With that in mind you can see how the parents were willing to go with Hirano, the logic of 'he's proposing to do what you were thinking about doing a couple of months ago'. It would still have been the wrong call, not in Charlie's interests, given his deterioration since January. However there was a kind of continuity the parents were obviously clinging to.

 

[agricola]

True. My friend with advanced pancreatic cancer has been besieged with people urging her to try quack treatments, some of which aren't just expensive or pointless but would actually kill her. I mean genuinely that if she hadn't been strong enough to resist their persuasion she'd have already died a horrible death. It makes me furious.

The same sort of individuals carried out the same sort of activity with an in-law of mine when he had what turned out to be terminal cancer. As you correctly state, its the sort of behaviour that really does enrage because of the effect that they have, and its done solely in order to generate money.