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.

lucy im so sorry for your loss

charlis parents need to hear from peopl like you although at this point i doubt they'll listen

Interesting that GOSH have asked for another court hearing to explore the options but have released a statement to the effect that they believe no treatment is the best course of action still.

Its very interesting and I don't for one minute think, or hope, its to pave the way forward for any kind of treatment.

FruitCider

I think GOSH have made a very smart move there and hopefully this will appease the army enough to stop this awful hate campaign against them.

I don't think the 'new evidence' will make a difference to the court ruling and clearly GOSH don't either. This is just an attempt to push on and end all of this madness whilst limiting the backlash they've been facing. People cannot claim GOSH don't care 'just want to appear better than other countries' and are blocking the parents at every opportunity if they have just asked for another hearing, which is exactly what the parents themselves want.

I think given the circumstances and media attention this was the best hand they could have played.

Thank you GlitterDust. That is very informative.

Just to add to Glitter's post there are many different types of ventilation that used for children with complex needs (non invasive ventilation which is different to life support ventilation is particularly being used for children with neuromuscular diseases and in a very very small minority for patients with cf) in the community and ime home ventilation is an area of medicine and mdt care that is increasingly used. GOSH i understand use home ventilation for many patients and have teams dedicated to the care of these children specifically in relation to their ventilation requirements. For home ventilation not to be an option I would conclude that there are sound clinical reasons for it not to be appropriate - and probably (I am making a personal assumption here) ventilation may not be the only or significant factor in this particular case.

That said it is a difficult case for all directly involved and I do feel for the family and professionals in what are incredibly difficult times.

just seen connie on the nws saying shes happy with th court hearing and charlie may gt a chance of treatment now

oh dear

The messages on the CA page are getting worse and worse. If the judge says the treatment is to be withdrawn, I can't begin to imagine how these people are going to react

thy already said that worn thats why i dont understand why this is carrying on

Hi Charlie's Army - Please remember, THE FIGHT IS NOT OVER! We need you more than we ever have before to remain POSITIVE, STRONG and HOPEFUL. Strive for TRUTH and JUSTICE. Just as Chris, Connie & Charlie do
Do not waste your time of trolls, we have bigger battles to fight & win. Thank you for your support so far, let's get Charlie his chance so our family can celebrate with all 65,984 of you! #savecharliegard #charliesfight #iamcharlie

The sister is a major factor in this, she regularly whips them up and anyone who politely suggests any different to her is a 'troll' who doesn't know the truth.

They really turned on one of their own supporters yesterday who asked why money from the fund couldn't be used for the pastor from America.

Someone has also set up a new fund to cover their legal fees, even though they have no legal fees as is being done pro bono.

Woke up this morning getting more and more sad and at times angry about this poor little lad. Some of the comments from CA (and indeed the tabloid press) are astonishing and show these people have no insight whatsoever into what the reality of the situation is. They don't understand that some of the "doctors" who are proposing the "treatment" are not doctors in the everyday sense of the word. They are scientists with a PhD eg a chemist with a PhD. They may understand the chemicals involved in the disease/the genetic basis of the disease etc and will have studied the effects of the "treatment" on cell lines etc, but they are not experts in treating whole human bodies (disclaimer - some will be medical doctors as well as scientists). Those calling for Charlie to be given "the treatment" - it has never been tested on humans - how does anyone know how much should be given, how often (hourly, daily, weekly), what is the best way of administering (oral, intravenous, intrathecal). The ignorance is staggering. I can accept this to be the case from some of the half-wits in CA and to an extent, the pro-lifers - but it is a disgrace that the media are whipping up this frenzy and don't even get me started on Trump.

I also worry about what will become of Charlie's parents once he dies - which is inevitable and won't be long now. Their desperation has been totally hijacked by external parties with their own agendas, agendas which do not have Charlie's best interests at heart. What is going to become of his parents once he dies? Once CA have latched on to other causes and the media have forgotten him? Once the realisation creeps in that to most of these "supporters", Charlie was just a flash in the pan, the cause of the week? Once the anger directed towards them starts to sink in? The realisation that perhaps they failed their child by putting him through this? Its really just so tragic and the only "winners" in this are the media and self-promoting "journalists" who are making profit from misery.

To Charlie - I really hope your suffering ends soon and you can finally be at peace xxxx

Strive for TRUTH and JUSTICE. Just as Chris, Connie & Charlie do
How much striving for TRUTH and JUSTICE is Charlie actually doing?

FruitCider

I think GOSH have made a very smart move there and hopefully this will appease the army enough to stop this awful hate campaign against them

I don't think the 'new evidence' will make a difference to the court ruling and clearly GOSH don't either. This is just an attempt to push on and end all of this madness whilst limiting the backlash they've been facing. People cannot claim GOSH don't care 'just want to appear better than other countries' and are blocking the parents at every opportunity if they have just asked for another hearing, which is exactly what the parents themselves want

I think given the circumstances and media attention this was the best hand they could have played

Perfectly put.

just seen connie on the nws saying shes happy with th court hearing and charlie may gt a chance of treatment now

I don't understand her thought process.

In the original court hearing, the parents agreed with GOSH that Charlie's current situation was not sustainable and should not be sustained. It seems his condition has deteriorated since then.

Any proposed treatment cannot improve his condition; even the doctor originally offering it said so. It can only, possibly, prevent it getting worse.

It will not cure the damage already done.

What is she hoping for? What happened after the first court hearing to set her, (or them, but it seems to be mostly her) off on this collision course with GOSH?

He's not taking up a bed, he's a sick child being cared for in a hospital and bed numbers should never be a factor in deciding when to let him go.

This.

Only his parents and the medical staff can make decisions IMO. It's an awful situation for them all and, of course, for Charlie. They deserve bucketloads of compassion.

I don't understand why it's only now that GSOH are looking at the potential of this experimental drug treatment from the US but there must be reasons that I don't get and it's not appropriate for me to expect them to share those reasons with us. I just hope that everybody involved is well supported.

what truth do thy mean?

Connie clearly believes Charlie is going to get "his chance" (whatever she perceives that to be) or she wouldn't be spending so much time away from him, in what could be his last few days, courting the media.

Does anyone know what the mothers occupation is/was?

User and daily mail

I am so pleased you managed to talk and not erupt. Daily mail we all make silly comment here (myself included all the fucking time ) and I do appreciate that you took it down and didn't shit kick me !

Verocity is a word but maybe not my best choice been on the wine

Darth and alliknow

Thanks for understanding / this discussion can get very very polarised . I appreciate being able to think things through without getting attacked. It feels like there are only 2 schools of thought allowed on this topic .
I found out last night my DP is in the CA camp ! We agreed to disagree but his stance was 'what do you think all disabled people should be killed' . I decided it wasn't the time to send Him the court hearing ......

This is triggering for people with disabled kids , for people that have lost kids and for people that have allowed suffering to end

I think that's why it's caught the attention as it brings up issues that we didn't have to face a few years back as medical science is so evolved

The Drs, from GOS think he's in pain, don't they? I'm sure I read that in the judge's judgement.

They said Charlie can possibly be because anyone who is on a ventilator can find it uncomfortable. They also mention suctioning to support this educated guess.

Being suctioned is momentarily unpleasant but lasts a few seconds. However it needs to be done regularly, and some people tolerate it better than others. Since Charlie can't react either way, there are no clues as to which type of response he has to suctioning etc. One of the discomforts of suctioning is the gag reflect it causes, but Charlie doesn't have a gag reflex due to his extreme weakness, so it's quite possible he doesn't experience that particular discomfort.

So, because is it possible to experience discomfort while being ventilated, and because Charlie can't prove either way, they assume he probably is.

Charlie's Mum is sure he isn't in pain and I can understand why she would say that. Staffing shifts change at the very least twice daily, but the parents are always there watching him with the greatest interest of anyone else on this planet. No matter how professional and lovely a nurse they may be, they are not Charlie's flesh and blood, and go home after their shift to their own lives and loved ones. Charlies Mum does not.

Is anyone else wondering what Charlie's dad's views are now?

I realise it's not possible to listen to two people at once, but it somehow seems that the only person we hear from now is mum, the sister and the maniacs of Charlie's Army

As I said yesterday afternoon when the news about Monday's hearing came out, good call on the part of GOSH. I don't get a sense that GOSH have been cowed into this, more that it's a smart offensive move to reassert their initiative and do what's so obviously best for Charlie. I don't think CA are bright enough to get that, they seem to see it as a victory. Hopefully it will closure for the child who is the priority in all this but I don't think anything will appease CA who really are just a noisy irrelevance compared to Charlie. I feel for poor Mr Justice Francis however.

I really hope any avenue of appeal is closed off by the Court of Appeal so that we don't have any possibility of a re-run. It's obviously essential going forward that dedicated medical professionals aren't held to ransom by 'determined parents' and the new double edged blade of crowdfunding. This isn't a case of medical negligence which is the mechanism whereby doctors can rightly be held to account, it's verging on an abuse of process - the waste of financial and medical resources is abhorrent, and I don't see how it's possible that other very, very sick children haven't been compromised.

I really hope Monday brings a good outcome for Charlie.

It worries me that mum says Charlie may now get a chance at treatment. My understanding is, and I think most of the posters on here feel the same, that GOSH don't think any new treatment is going to work and are going back to the High Court for that confirmation and confirmation that the kindest thing for Charlie is to switch the life support off.

If the High Court rule that not only is Charlie not going to get the treatment but that the life support should be switched off as soon as possible she is going to be furious.

I can't see her accepting the High Court decision just as she didn't before and this time she will be spurred on by the crazy lot. They will be saying GOSH lied to the High Court or the Judge doesn't have children so can't possibly understand or any other rubbish they come up with.

All the time the arguing and fighting goes on poor Charlie suffers

I have no idea what is going through Connie's head at this time. But I do think she is well and truly backed into a corner (as is Chris) Even if they come to a point of acceptance they can hardly say that seeing that the last week CA has been full of 'murderer' for anyone who agrees to turn off LS.

The very people who should be supporting them are also the very people who will quickly turn against them. (In a negative horrible way)

sorry total i disagree their not medics how could thy possibly know just sitting with him

The parents and other family are part of CA.