Charlie Gard case

[LovelyBath77]

AIBU to feel the drama over this poor little boy is not helpful? I read the Pope and Donald Trump were suggesting they help- when several courts have agreed it is in his best interests to let the little boy die with dignity. I feel sorry for him as he may be in pain and it is unfair to add further to false hope for the parents as well. I also feel that many, many people has awful situations where babies die, sadly, for example stillbirths and other cases which are just un-heard and un-noticed and people have to deal with it, so why is there such a huge focus here.

Thank you for explaining double

I suspect GOSH are just rubber stamping the original decision.

I suspect there will be an investigation at some level into this, as I don't think he will be given the treatment and I suspect he will die very shortly without the need to switch the support off.

There will need to be some form of reassurance that GOSH made the right decisions at each step, probably for them as well as the family and the public.

I have nothing but sympathy for them. To be untrained and parent to an apparently healthy baby - who knows how had they would fight to keep the belief there was a magic cure?

I think in the nicest possible way GOSH are bouncing it back to the court to cover their asses. And considering the current climate I don't blame them.

But anyone who thinks that a profoundly brain damaged child can be 'cured' by any medication is in serious denial/ magical thinking. It's the equlivant of thinking you can have your foot amputated and taking a pill will make it grow back.

This poor baby's body is struggling.

As for the why not try the medication @unweavedrainbow who the MHRA even allow that?

My heart is aching for him too @badger.

I saw on the news tonight that GOSH and several other highly qualified medical professionals stated that Charlie is almost definitely in pain. His internal organs are trying to shut down and his immune system has crashed.

In addition, he is virtually deaf and blind and cannot even fathom what is going on, so he has no way of relaying to anyone how he is feeling.

It's dreadful. We wouldn't let an animal suffer like this, yet we do it to people? What's that about?! The parents need to get a grasp on reality.

And I am enraged that so much nasty stuff is being said about GOSH. I kind of hope the final outcome on Monday is to put the little boy out of his pain, and let him be at peace. But at the same time I am dreading the fallout from it, from the parents and the harpies on facebook; Charlie's Army!!!

It's good that it is being heard on Monday but what if they want/need to refer it higher again? How long will that take?

I realise the parents want to cling on to any hope but can they honestly not see how Charlie looks? His bloated body and soul less eyes make me upset but then add the facts that he can't see or hear, can't move, can't cry and is having seizures.

What good in all honesty would a 10 per cent improvement be even if they honestly think that is likely?

There is a lot of misunderstanding by his supporters, one was saying in his page how lovely and chubby he is looking, growing nicely

@Stopnamechanging

I welled up at Stiffy's posts and her generosity in sharing her family's experiences in such a dignified way.

I think she, and all the other posters who have shared their experiences on such an emotive thread have been vital in explaining and educating all of us.

To be clear, I'm not trying to gain brownie points - rather I've been in a position where people say they will donate, but don't. Not that I'm suggesting anyone on this thread has done this. I just wanted Stiffy to know her posts had a profound effect on me and that I did as I promised.

A lot of people on the CA site are saying they can't understand why he isn't being allowed home to die - It's my understanding that he may not survive the transfer even with a mobile ventilator (it was the same case for my relative), but I was wondering if the did take him home, hypothetically, would that mean they could deny access to medical professionals and other people what with it being their house and all? Would they then have to get a police warrant to gain entry?

I've donated to GOSH today, this whole saga has Made me so sad. Watching Connie on TV this morning I can see why people believe her but she must be so deeply in denial.
Its horrendous to even think it but I really hope he is at peace soon.

I worry for the parents too. As much as I think they have now taken it too far and they are being unfair to their baby and GOSH, his passing is going to be hard on them.
Could it get to the point that if the court decides enough is enough that they will be forbidden to be with him when he is taken off support?
How would you ever get over that?

If the ruling is overturned on Monday a very dangerous precedent is going to be set.

They won't unless the science is there to support treatment being in Charlie's interests. They can't.

Can anyone explain in layman's terms what this new evidence is? I've read the letter but my brain can't make any sense of it what so ever, and wouldn't want to form an opinion on anything that I don't understand

Let's say, for the sake of argument, that this experimental treatment is successful and Charlie is somehow stabilised and won't die.

What sort of life will they all have once the attention, support and money has stopped coming in? Are they really prepared for the endless round the clock care that's required to keep an extremely disabled person stable? For months, years, decades? What happens when they're unable to do it anymore? He goes into a care home and all the grief that that entails? They would have no life whatsoever, no money, rest periods, holidays, life outside the house looking after someone that would never respond or give any basic feedback other than perhaps a blink or finger movement. Never ending hospital admissions to deal with blocked feeding tubes, infections, ventilation problems etc.

They think this is what they want. It's a different world once you find yourself living the reality on a daily basis.

Be careful what you wish for.

I hope you don't mind me, I've been lurking on this Charlie Gard thread and others. I have a background in bioethics.
In terms of the letter, as far as I can gather, the type of mitochondrial depletion syndrome that Charlie has causes him to have a genetic mutation that means that he can't easily synthesise a chemical that the body uses to replace mitochondria as they die. This means that he doesn't have enough mitochondria to power his body. The treatment's aim was to give him this chemical so that he could make more mitochondria-and therefore get, at least a bit, better. The thing with the treatment is that there were some issues that hadn't been properly explored, such as whether or not the treatment could cross the blood-brain barrier. Thus the treatment would be experimental. These researchers are arguing that they have data that shows that the treatment molecules can in fact cross the BBB. They argue that this means that Charlie should be treated. It's not unethical, per se, if it means that he could recover some quality of life. Experimental treatment does regularly take place-especially if the patient/subject has very little left to lose. The key consideration though is that there does have to be a realistic possibility of increasing quality of life. With Charlie there really isn't and so arguably it would be unethical.
The letter simply doesn't take into account how sick Charlie really is-and I suspect that they're not actually aware of how sick he is. Even if the treatment works it can't repair the damage already done. Therefore it shouldn't really make much difference to GOSH's case.
I hope you don't mind me butting in.

unweaved posted this earlier in the thread if that helps.

Maybe the parents are worried that if they don't fight the hospital they will be accused of not loving Charlie enough.

Was just about to re-post that Stop.

It was an excellent post by unweavedrainbow.

I got a bit confused about what Connie said. She said he has a 1 in 10,000 chance of getting better, so a 10% chance!

1 in 10,000 isn't a 10% chance!

Maybe I misheard her? Did anyone else see the interview?

A truly devastating situation for Charlie and his parents but surely common sense must now prevail. Given it takes about 10 years to get a new medication as simple as an indigestion tablet from the lab to animal studies to humans - how the heck do people think it is ok to inject Charlie with drugs on the vague premise it might "help him". This is not like a phase 1 clinical trial in a fully consenting adult with advanced cancer who is willing to take part in a trial of new treatments to help future cancer patients, even though they themself will not benefit. Charlie is not able to give his consent to be experimented on. I've worked along side many medical researchers over the years and some of them are ruthless in their quest to do groundbreaking work - don't for a minute think its all about helping people - for many, its about getting the grants to keep their research going or for their research institute to pip another to the post. The cynic in me wonders on the motives of the scientists proposing these treatments. The media coverage and the agonising of us all over this serves to catapult research on this devastating but very rare condition into the spotlight. Come the next round of grant applications, a number of these researchers are set to do very nicely from all this.

From the latest GoFundMe they've promoted:
"I was thinking of help for Charlie's Mum and Dad, their pockets must be so drained by now"

The treatment has now been offered to Charlie Free of Charge.
Connie and Chris have £2million in instantly accessible funds, for where they feel it is necessary to facilitate Charlie's Fight.

Except, they don't feel the need to put their money where their mouths are, hence the latest appeal for the public to donate another £5k to fund a pro-life Pastor to fly over and fight for Charlie.

We are being requested to donate that, while the family don't think they should pay 5k out of their £2million for "Charlie's Fight".

I think GOSH are doing the right thing taking it back to court. The parents have used the extra time 'to say goodbye' in order to whip up such a media frenzy that it was impossible for the doctors to enforce the ruling. Let these alleged doctors who can apparently save Charlie explain themselves to the court next week. I wonder if they will also back track like the original American doctor did? Hopefully a clear ruling that there is no new treatment that can benefit Charlie and one that outlines the reality of his condition will put an end to this circus. I do think though that if the courts uphold the original ruling they need to specify an exact time frame. It isn't fair to expect the doctors and nurses at GOSH to navigate that themselves given the feelings of the parents and the backlash they are facing.

I'm wondering what will happen should the treatment make a slight improvement

What then?

Will they insist on carrying on indefinitely? Just in case of more improvements

At what point will they see that it's time to let him go?

Because I can see this treatment being used as a permanent extension

@Goingtobeawesome

I don't think this is about people's perception of how much they love their son.

I think his parents feel able to accept the diagnosis of irreversible brain damage.

Thus treatment that potentially could improve his genetic condition is a valid step to take - even it it is experimental.

Hence the level of brain injury is surely now the crux of the argument.

Treating Mito is not in Charlie's best interests if he is still left severely brain damaged.

Sorry - should have said "don't feel able"

I've just read a very lengthy update on a news website about the situation and what the proposed treatment might do to help. Which, it seems, is sadly naff all. I found myself getting upset reading it as the parents are disagreeing with the Drs that Charlie is in pain and brain damaged- they say they know him best and he isn't. To think you know better than a ton of the best Drs in the world is amazing to me. That poor boy. Nobody knows exactly how much discomfort/ suffering pain he is in very second and meanwhile while he lays there all this shit is going on in the press, bad mouthing GOSH and Drs who are probably stressed out of their minds with this case and all their other workload, and bloody idiotic Trump has stuck his oar in giving pointless false hope to the parents who are already in denial.

Thanks stop I still don't think I'm any the wiser though as not sure what the blood Brian barrier is all about, but I have no medical knowledge so can't expect to understand it all!