Charlie Gard RIP ..

[Thora]

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

I understand they looked at it, but because it was so untested it had to go to a research ethics committee and in the mean time Charlie's brain damage became significant and irreversible. This was in January so they knew there was no realistic chance of treatment since then.

 

[Cid]

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 ..

OECD (2015) says US per capita public spend is $4692, UK total, i.e including private healthcare is $4125. Public $3286. US total $9507.

 

[weltweit]

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

Don't know if you were being cynical or not, I was a little surprised there wasn't already a news thread.

 

[frogwoman]

RIP, hope he is in peace now

agree that the pro lifers and American doctor's involvement has been a disgrace.

 

[Wilf]

I understand they looked at it, but because it was so untested it had to go to a research ethics committee and in the mean time Charlie's brain damage became significant and irreversible. This was in January so they knew there was no realistic chance of treatment since then.

Aye, I agree totally. It's just the notion that it was 'the same' treatment being offered GOSH and later by Hirano probably added to the parent's self justification in fighting on. Hirano is a twat in not engaging with GOSH - he presumably didn't want to get to the point where he'd have to admit his treatment wasn't in Charlie's best interest - it was a self interested non-engagement. Suppose I'm just picking up on it not being actual snake oil - just something that was unlikely to help in January and was never going to work after Charlie deteriorated. Not putting it very well, but what I mean is that it being 'the same treatment', but in different circumstances, added to the parent's torment.

 

[Wilf]

Don't know if you were being cynical or not, I was a little surprised there wasn't already a news thread.

I think the comment was just saying you made the right call. Like you I was surprised there was no thread a few days ago, but I also thought it wasn't quite the moment to start one off.

 

[scifisam]

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.

In my friend's case they weren't making any money out of it personally (she's smart and completely ignored companies contacting her), they were just being "helpful." Basically promoting their pet idea so that they can pat themselves on the back without actually putting any thought into what they were suggesting. My friend had had a Whipple procedure taking out most of her pancreas, duodenum, bile duct, gall bladder and stomach and could barely process food, so needed high calorie, low fibre food with very specific features. These people were recommending bulky, fibre-heavy low-calorie meal replacement plans. She would have quickly died of starvation and diarrhoea. I wanted to thump them.

I also want to thump Professor Hirano and believe he should be subject to professional censure for his behaviour.

 

[Thora]

Aye, I agree totally. It's just the notion that it was 'the same' treatment being offered GOSH and later by Hirano probably added to the parent's self justification in fighting on. Hirano is a twat in not engaging with GOSH - he presumably didn't want to get to the point where he'd have to admit his treatment wasn't in Charlie's best interest - it was a self interested non-engagement. Suppose I'm just picking up on it not being actual snake oil - just something that was unlikely to help in January and was never going to work after Charlie deteriorated. Not putting it very well, but what I mean is that it being 'the same treatment', but in different circumstances, added to the parent's torment.

Yes, and as they don't believe there was any brain damage they can now say that *if* GOSH had gone ahead with this treatment in January then Charlie would have been "cured" (not that that was ever a possible outcome).

 

[SheilaNaGig]

When Connie Yates cried out in court "They're lying! They're lying!" what was she referring to?

I'm trying to understand what the parents believed that was so at odds with the medical team.

 

[gosub]

Don't know if you were being cynical or not, I was a little surprised there wasn't already a news thread.

No, I found the whole yelling at distressed parents and paediatricians as described by our media over the last month, quite distressing

 

[Reiabuzz]

This was a bizarre case. In their position (and I've got a newborn myself) I think I would have listened to the highly qualified and experienced doctors who presumably don't make a decision like that lightly. Awful situation for all involved but the daily mail fuelled media campaign was arguably the worst bit.

 

[gosub]

When Connie Gard cried out in court "They're lying! They're lying!" what was she referring to?

I'm trying to understand what the parents believed that was so at odds with the medical team.

that the President of the US and leadars of a global religion had some insight rather than an agenda...

 

[SpookyFrank]

When Connie Gard cried out in court "They're lying! They're lying!" what was she referring to?

I'm trying to understand what the parents believed that was so at odds with the medical team.

I really feel for the GOSH team on this. Half the world attacking you when you're trying to do the best possible thing with an appalling situation. The dignity and kindness they've shown despite all the bullshit does them enormous credit.

 

[Bahnhof Strasse]

I really feel for the GOSH team on this. Half the world attacking you when you're trying to do the best possible thing with an appalling situation. The dignity and kindness they've shown despite all the bullshit does them enormous credit.

This. Plus the judges and other legal bods. Through the fucking wringer and then some.

 

[weltweit]

I really feel for the GOSH team on this. Half the world attacking you when you're trying to do the best possible thing with an appalling situation. The dignity and kindness they've shown despite all the bullshit does them enormous credit.

The medical team in the hospital where my mum was in intensive care were also great, I suppose they have a lot of practice at dealing with end of life and family issues. Unfortunately her local GP hadn't been so great, perhaps there had been a communication issue but he didn't realise she was that ill, despite a number of increasingly desperate calls from my dad.

 

[Red Cat]

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.

I think the fact Charlie inherited the gene responsible from both parents must have made it particularly hard. No wonder really that they wanted someone else to blame.

 

[scifisam]

I feel for the other families visiting their sick children at the NICU and having protesters shout abuse at them as they go in (and sometimes even inside the hospital). I doubt Charlie Gard is the only baby that's died there recently and the protests will have made those parents' lives even more difficult. The parents released a statement that decried violence but endorsed the protests.

 

[mather]

No wonder really that they wanted someone else to blame.

That's out of order, they didn't 'blame' anyone, they just wanted to hope against all odds that their son could be saved, as any parent would.

 

[Red Cat]

That's out of order, they didn't 'blame' anyone, they just wanted to hope against all odds that their son could be saved, as any parent would.

It's not out of order at all. Their actions towards GOSH were blaming. I was saying that they must feel terribly guilty and it's understandable that they would want to blame someone, anyone for something so awful to have happened to their child.

 

[mather]

It's not out of order at all. Their actions towards GOSH were blaming. I was saying that they must feel terribly guilty and it's understandable that they would want to blame someone, anyone for something so awful to have happened to their child.

I'm sorry but you are out of order here, how dare you accuse them being guilty, if the disease is heritable do you actually think they passed it on on purpose. They were in no way guilty for poor Charlie condition.

Try having some empathy for heaven' sake.

 

[Ptolemy]

All I'll say on this terribly sad case is that sometimes there are things worse than death. I think the collective fear of death that we tend to have does, in some cases, mean that people are often kept alive beyond their control well past the point where that life has any quality.

 

[Looby]

I'm sorry but you are out of order here, how dare you accuse them being guilty, if the disease is heritable do you actually think they passed it on on purpose. They were in no way guilty for poor Charlie condition.

Try having some empathy for heaven' sake.

Read what she said. Not that they ARE guilty but that they might FEEL guilty.

 

[Red Cat]

I'm sorry but you are out of order here, how dare you accuse them being guilty, if the disease is heritable do you actually think they passed it on on purpose. They were in no way guilty for poor Charlie condition.

Try having some empathy for heaven' sake.

I didn't accuse them of being guilty, I said they would be feeling terribly guilty. And they will, however irrational that is.

But go ahead and have a go at me for being a cunt if it makes you feel better.

 

[mather]

Read what she said. Not that they ARE guilty but that they might FEEL guilty.

Doesn't that imply on some levels that they are guilty though? I mean how does Red Cat even know that they feel guilt about that, did she ask them?

 

[felixthecat]

I'm sorry but you are out of order here, how dare you accuse them being guilty, if the disease is heritable do you actually think they passed it on on purpose. They were in no way guilty for poor Charlie condition.

Try having some empathy for heaven' sake.

I have no idea how you came up with this from Red Cat's post.
Of course the parents will feel guilty. All the what ifs and maybe will be playing on their minds, poor sods

 

[ShiftyBagLady]

I don't see how it would be helpful to speculate about their guilt feelings unless you are suggesting that their actions and decisions were made by something other than a parent's desperation to not have their child die.

It's not something you could possibly know anyway and you're making assumptions about how people who pass genetic conditions feel about that or blame themselves.

 

[Red Cat]

I don't see how it would be helpful to speculate about their guilt feelings unless you are suggesting that their actions and decisions were made by something other than a parent's desperation to not have their child die.

It's not something you could possibly know anyway and you're making assumptions about how people who pass genetic conditions feel about that or blame themselves.

I think their actions and decisions will have been made as a consequence of all sorts of complex and unbearable feelings that are likely to have involved feelings of guilt.

I was trying to understand both the degree of denial and the anger towards GOSH staff. I haven't made any condemnation of the parents.

 

[butchersapron]

I think their actions and decisions will have been made as a consequence of all sorts of complex and unbearable feelings that are likely to have involved feelings of guilt.

I was trying to understand both the degree of denial and the anger towards GOSH staff. I haven't made any condemnation of the parents.

I think this is called empathy.

 

[Red Cat]

I think this is called empathy.

Thanks. I thought so too.

 

[weltweit]

Charlie Gard: A case that changed everything? - BBC News

An interesting article, which mentions that in the UK the state has a large hand in deciding with what is best for a child (including where beliefs do not permit blood transfusions) while in the US parents or surrogates have the higher legal say.