Topic: Charlie Gard - right to life case

[So… Howard Philips]

People who are 'pro-life' giving death threats. 

But the people they want to kill will burn in hell, hence the theological justification.

[Jiminy Cricket]

I am surprised GOSH are intervening to prevent treatment. They must be very confident nothing can be done for the poor child. I do feel terribly sorry for the poor parents too. I think there's an element of not being able to U-turn too. When you've fought so hard for something you can't give up, nor be seen to give up. It's easy for us to sit and say, 'time to let him go' , but I can understand while they believe there's hope they'll try anything.  What I struggle to understand is why Gosh are opposed to an attempt to help him. I guess they figure there is only a tiny, tiny chance of help, and in the meantime the poor lad is suffering.

The politics\media\etc, I can't get my head around.

(If in any way this post sounds critical of GOSH, I assure, that's not my intention).

Because it is considered unethical to run experiments on children / those unable to give consent. It is very strong mediacl opinion that nothing practical can be done to save the boy's life. Experimentation does nothing for the boy - it only serves scientific curiosity (at best).

[PaulF]

Thanks jiminy, I wasn't aware of the experimental angle.

[Rhi]

Thanks jiminy, I wasn't aware of the experimental angle.

The "treatment" they want to attempt on the child has never been used before on any human. It doesn't have approval in any country in the world. All but one of the group of US doctors who are feeding this pipe dream to Charlie Gard's parents have patents pending on the outcome. They've been pushing the FDA hard to rush through an approval on it. They're willing to experiment, with no prior indication of the results, on a baby, for their own financial gain. They're fucking scum, and when it all goes horribly wrong, the British government will be left footing the bill to bring the poor child home, where he'll be taken straight back to GOSH as the only hospital in the UK (if not Europe?) capable of caring for him until he passes away.

One of the doctors caring for him at GOSH said he can't imagine keeping the poor thing alive another day, let alone the weeks or more it will likely be. They dread having to put this kid through this every single day. We often think that death is the worst thing out there, but what this poor child is being put through is worse.

Awful, awful situation.

[Lfsea]

The "treatment" they want to attempt on the child has never been used before on any human. It doesn't have approval in any country in the world. All but one of the group of US doctors who are feeding this pipe dream to Charlie Gard's parents have patents pending on the outcome. They've been pushing the FDA hard to rush through an approval on it. They're willing to experiment, with no prior indication of the results, on a baby, for their own financial gain. They're fucking scum, and when it all goes horribly wrong, the British government will be left footing the bill to bring the poor child home, where he'll be taken straight back to GOSH as the only hospital in the UK (if not Europe?) capable of caring for him until he passes away.

One of the doctors caring for him at GOSH said he can't imagine keeping the poor thing alive another day, let alone the weeks or more it will likely be. They dread having to put this kid through this every single day. We often think that death is the worst thing out there, but what this poor child is being put through is worse.

Awful, awful situation.

I'm actually quite cross about it all now. I'd go as far as to say that keeping him alive is doing far more harm than good, not only for the child but for the British medical profession whose sanctity is, without an hint of conceit, is more important than the life of one desperately poorly child. I also think that someone high up in the BMA or GOSH or whoever makes the decisions should have had the bravery the American doctors where to go. what a strange narrative to allow input from a doctor whose treatment is entirely theoretical.

I saw a very interesting image of the baby Charlie the other day. We are used to seeing that image of him cuddling the teddy looking all cute and serene - like nothing is wrong with him. However, this picture which is obviously very recent (Chris Gard has a beard in the image) shows the baby's face engorged and discoloured, intubation everywhere. His appearance has been carefully media managed, and I suspect this was a photo the parents wouldn't have been happy about going public. After seeing that, I'm further convinced that it is a cruel process Charlie is being put through and deserves better than what he is going through currently.

[No666]

My wife took the trouble to email GOSH to express sympathy and understanding to the team directly involved and the wider staff there. Their reply left us in no doubt they appreciated the support and are feeling under enormous stress.

[Something Else]

The "treatment" they want to attempt on the child has never been used before on any human. It doesn't have approval in any country in the world. All but one of the group of US doctors who are feeding this pipe dream to Charlie Gard's parents have patents pending on the outcome. They've been pushing the FDA hard to rush through an approval on it. They're willing to experiment, with no prior indication of the results, on a baby, for their own financial gain. They're fucking scum, and when it all goes horribly wrong, the British government will be left footing the bill to bring the poor child home, where he'll be taken straight back to GOSH as the only hospital in the UK (if not Europe?) capable of caring for him until he passes away.

One of the doctors caring for him at GOSH said he can't imagine keeping the poor thing alive another day, let alone the weeks or more it will likely be. They dread having to put this kid through this every single day. We often think that death is the worst thing out there, but what this poor child is being put through is worse.

Awful, awful situation.

spot on. Funny how these American doctors are doing so much pr on this. I mean it's almost as if that's part of the outcome they are looking for

[So… Howard Philips]

spot on. Funny how these American doctors are doing so much pr on this. I mean it's almost as if that's part of the outcome they are looking for

I assume if an American child had the same tragic condition the doctors would volunteer their treatment and care facilities gratis?

[WhereAngelsPlay]

I assume if an American child had the same tragic condition the doctors would volunteer their treatment and care facilities gratis?

You're joking aren't you,they haven't even offered Charlie free treatment,the parents have raised just over £1.5m I think.

[So… Howard Philips]

You're joking aren't you,they haven't even offered Charlie free treatment,the parents have raised just over £1.5m I think.

Not joking, just raising an ironic eyebrow.

That £1.5m pot will attract a lot of snake oil salesmen.

[damomad]

This was never going to end happily. The parents have stopped legal proceedings. Hopefully they can grieve in peace at the end of this.

https://www.theguardian.com/uk-news/2017/jul/24/charlie-gard-parents-end-legal-fight-over-critically-ill-baby

[WhereAngelsPlay]

This was never going to end happily. The parents have stopped legal proceedings. Hopefully they can grieve in peace at the end of this.

https://www.theguardian.com/uk-news/2017/jul/24/charlie-gard-parents-end-legal-fight-over-critically-ill-baby

Good for them,I hope that they get all the help that they are going to need after this.

As for the vultures who used the boys condition as a tool to push an agenda,well I cannot post what I hope happens to them without rightlyfully upsetting fellow Rawkites.

[PaulF]

My wife took the trouble to email GOSH to express sympathy and understanding to the team directly involved and the wider staff there. Their reply left us in no doubt they appreciated the support and are feeling under enormous stress.

I pop in there for lunch about once s month. If anyone wants me to organise a small signed letter to support the staff then I gladly will.

Ynwa Charlie

[thejbs]

The biggest mess will come when the boy, sadly and seemingly inevitably, succumbs to his illness.  Should it happen in palliative care without the US experimental treatment, the medical experts will be pilloried by an overly emotional public, fed by the media.  If the court ruling is overturned and he flies to the states for unsuccessful treatment, it'll be surely said that had he got there earlier he'd have lived.

As I (more or less predicted), the family and the US Doctor are going with the line that if he'd been treated earlier he'd have had a chance.  Totally disingenuous and (as the shouts from protesters today would attest) dangerously undermining health experts.

[Bunter]

Really sad news but inevitably this was always going to be the outcome. The parents, as much as they want wanted whats best to their own minds, have been horribly exploited by parasites with an agenda who have used them and Charlie.

[RJH]

As I (more or less predicted), the family and the US Doctor are going with the line that if he'd been treated earlier he'd have had a chance.  Totally disingenuous and (as the shouts from protesters today would attest) dangerously undermining health experts.

Yeah, sadly the statement by the family basically implies that it's the Hospitals fault for causing a delay.

On the other hand, GOSH have put out a statement that is incredibly damning of the US doctor:

http://www.gosh.nhs.uk/news/latest-press-releases/gosh-position-statement-issued-high-court-24-july-2017

In January, GOSH invited the Professor to come and see Charlie. That invitation remained open at all times but was not taken up until 18 July after being extended, once again, this time by the Court.
...
On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April. Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.
11.

[thejbs]

Yeah, sadly the statement by the family basically implies that it's the Hospitals fault for causing a delay.

Which leads to:

[WhereAngelsPlay]

Which leads to:

I wish that those names weren't blurred out as I would like to know how many of those tossers live in the UK.

[Crosby Nick]

Those reactions beggar belief. Well, guess they don't in these weird times we're living in but the complete ignorance shown to experts in any field is just bizarre.

[thejbs]

I wish that those names weren't blurred out as I would like to know how many of those tossers live in the UK.

All from the UK. And there's many more posts just like that on fb and twitter.

[damomad]

http://www.bbc.co.uk/news/health-40715955

On a similar note, is it any wonder we can't get enough staff for our hospitals. Underpaid, overworked and going by the trolls coming out in this case, undervalued.

[The Bournemouth Red]

What I don't understand, so looking for some help, is that the parents have abandoned trying to get further treatment in the States, and have accepted the decision that Charlie should be allowed to die.

So why won't the courts let them take him home to die with his family?  Surely nursing and palliative care can be provided?

It just seems like another kick in the teeth for his parents when they have finally decided not to put him through any more pain.

I may be missing an obvious point, so apologies.

[Inpeace]

think this is reasonable

http://www.mirror.co.uk/news/uk-news/great-ormond-street-hospital-doctors-10874328

[WhereAngelsPlay]

What I don't understand, so looking for some help, is that the parents have abandoned trying to get further treatment in the States, and have accepted the decision that Charlie should be allowed to die.

So why won't the courts let them take him home to die with his family?  Surely nursing and palliative care can be provided?

It just seems like another kick in the teeth for his parents when they have finally decided not to put him through any more pain.

I may be missing an obvious point, so apologies.

See I am seeing it a different way,the parents don't seem to care that the little lad is suffering.The decision by them was supposed to be made at 12:00 today but they keep on putting more and more demands in.Now they want a private team to care for him in a hospice so that they can spend DAYS with him,before this they wanted to take him home to die & Nurses & other specialists donated their time to do this and another company said that they would donate the specialised ventilator so that their wishes could be achieved.

But like I said,now they want him to be kept alive in a hospice so that they can prolong his suffering.That sounds harsh by me but to be honest I am starting to really dislike the pair of them,nothing it seems is good enough for them.

[PaulF]

But like I said,now they want him to be kept alive in a hospice so that they can prolong his suffering.That sounds harsh by me but to be honest I am starting to really dislike the pair of them,nothing it seems is good enough for them.

The parents are coming across as completely unreasonable. I don't have even 10% of the facts to hand, but it seems like it's simply not possible to move the poor lad to another setting without incredible risk that something goes wrong(*).
I can't dislike the parents but have to pity their situation. And hope in future , they can look back at this from outside the bubble and thank GOSH and the staff publicly and privately for all that's been done.

[WhereAngelsPlay]

More chance that they will go on an anti-nhs media tour of the USA.

[Alan_X]

What I don't understand, so looking for some help, is that the parents have abandoned trying to get further treatment in the States, and have accepted the decision that Charlie should be allowed to die.

So why won't the courts let them take him home to die with his family?  Surely nursing and palliative care can be provided?

It just seems like another kick in the teeth for his parents when they have finally decided not to put him through any more pain.

I may be missing an obvious point, so apologies.

He can't go home to die. He would die once the life support is turned off so would never make it home. He's also in a lot of pain and needs expert care and medication to make his life bearable. Taking him home would be for the benefit of the parents not the child. I have a little sympathy for the parents but they've prolonged the life of a baby who has no real chance of improvement and is in real pain according to the doctors who actually know his case and deal with him every day. There's a case that they've selfishly put their own child through months of unnecessary pain because they couldn't accept that he was beyond help.

The parent's backers have managed the image as if he's a normal little boy with his favourite toy who just needs treatment when in fact he's essentially dead and has massive brain damage.

They will take him to a hospice where he can be properly looked after in his final hours.

[Alan_X]

See I am seeing it a different way,the parents don't seem to care that the little lad is suffering.The decision by them was supposed to be made at 12:00 today but they keep on putting more and more demands in.Now they want a private team to care for him in a hospice so that they can spend DAYS with him,before this they wanted to take him home to die & Nurses & other specialists donated their time to do this and another company said that they would donate the specialised ventilator so that their wishes could be achieved.

But like I said,now they want him to be kept alive in a hospice so that they can prolong his suffering.That sounds harsh by me but to be honest I am starting to really dislike the pair of them,nothing it seems is good enough for them.

Sadly I have to agree. The child is beyond help and in pain. This now has fuck all to do with the baby and it's all about them.

[PaulF]

Sadly I have to agree. The child is beyond help and in pain. This now has fuck all to do with the baby and it's all about them.

I suspect the media have 'egged them on' somewhat

[thejbs]

Sadly I have to agree. The child is beyond help and in pain. This now has fuck all to do with the baby and it's all about them.

I'm also of that opinion.  I know it can be said that if we were in their position we'd think differently, but I really wouldn't.  It's a sad, sorry situation, but my pity for the suffering child trumps everything and I'm sorry to say I'm finding myself losing sympathy with his grieving parents.

That being said, I find anyone trolling the parents (or the GOSH staff) to be completely vile and abhorrent.

[courty61]

Feels to me that the parents have been led down the garden path by US doctors who wouldn't even take the time to come over to fully examine Charlie, despite being asked in the new year.

Did I read somewhere that the Dr they had lined up about taking him home had lied about his credentials?  Bit ill at the moment and can't find link.

[DivisiveNewSigning]

The problem is someone gave the parents false hope at some point, and they've clung to that and been completely unmoved by anyone around them. The abuse given to GOSH is absolutely disgusting, by the public mainly but also some of the sniping by the parents.

It's difficult because I've never been in their shoes, but they have come across very very badly and it just gets worse with each passing day. It's not even about Charlie any more, it's about the parents and what THEY want. I also think some of the media ought to be ashamed at how they've selectively reported this story.

It should never have been allowed to go this far.

[WhereAngelsPlay]

Feels to me that the parents have been led down the garden path by US doctors who wouldn't even take the time to come over to fully examine Charlie, despite being asked in the new year.

Did I read somewhere that the Dr they had lined up about taking him home had lied about his credentials?  Bit ill at the moment and can't find link.

He didn't reply to the GOSH experts when they contacted him in January,it then turned out that he kept making statements on the case but at no point had he read anything about the case or any of the legal opinions.

He was quick to get involved once they had raised over £1.5m though.Make of that what you will.

[Alan_X]

He didn't reply to the GOSH experts when they contacted him in January,it then turned out that he kept making statements on the case but at no point had he read anything about the case or any of the legal opinions.

He was quick to get involved once they had raised over £1.5m though.Make of that what you will.

According to a Guardian article I read he'd flown over to give evidence but when he actually saw the child (for the first time) he accepted that GOSH were right and that's when the parents dropped the case.

[WhereAngelsPlay]

According to a Guardian article I read he'd flown over to give evidence but when he actually saw the child (for the first time) he accepted that GOSH were right and that's when the parents dropped the case.

Yeah that is when it became apparent that he hadn't bothered to read anything on the case.He then said that the reason why he could no  longer use the little lad as a guinea pig was because GOSH and the high court had let too much time pass.

[courty61]

Yeah that is when it became apparent that he hadn't bothered to read anything on the case.He then said that the reason why he could no  longer use the little lad as a guinea pig was because GOSH and the high court had let too much time pass.

Which begs the Q why not come over sooner? Probably because he thought they had no money at that point

[thejbs]

The tabloids have continued to lead with pictures of Charlie from the end of last year, when he was opening his eyes and seemingly responding, before the illness fully took hold.  I think that's irresponsible. 

[Lfsea]

The tabloids have continued to lead with pictures of Charlie from the end of last year, when he was opening his eyes and seemingly responding, before the illness fully took hold.  I think that's irresponsible. 

I mentioned the same earlier in the thread. The difference between now and then is remarkable. He looks absolutely dreadful now - his head is absolutely enormous and his skin has gone a plum colour and there are tubes attached to every part of his body.

Those 'cute' photos bear absolutely no resemblance to his current appearance.

I was very concerned for the mother's wellbeing on the television earlier. She looked totally dead behind the eyes. I'm fearful that this whole process has totally broken her, and would go some way to explaining some of the decisions they've made recently.

[So… Howard Philips]

I wish that those names weren't blurred out as I would like to know how many of those tossers live in the UK.

Particularly the idiot ranting about not firing guns.

So firing guns is an option to be considered?

[Jake]

I was a bit hesitant to state my views at the start on such a public forum, but I have no respect for the parents whatsoever. I have sympathy for them, but that's different.

They've dragged the NHS through the mud, they've dragged the justice system through the mud (it may be fucked in some ways, but this has been the right decision all along) and most importantly they've prolonged the suffering of this poor, defenseless, deaf, blind, brain-injured, permanently in pain baby.