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.

How the hell doctors(or randon people on internet) can say that it's in Charlies "best interest" to die at hospital and not at home????

Because he has zero comprehension of where he is, so can derive no benefit from being 'at home'
His parents might think it is nicer for them, but that doesn't make it in his best interests.

Plus, how would he get there? In a bumpy and potentially painful ambulance ride without all the equipment and doctors needed to keep him stable and his pain under control?
And that's assuming he would even make it as far as his home.

We have a very scared little girl with us who has seen the latest' GOSH are murders placards' for the protests today, she thinks that she will die if she goes to her next appointment there.

It was said on the other thread, a hospice isn't the right place for Charlie to go. A hospice is for people who are dying to live out their last few weeks or days, not for someone being kept alive on life support.

Whitecat

A ventilator
Oxygen and air cylinders, enough to supply the ventilator continuously at the required flow rate for the duration of the remainder of his life
A source of suction to clear his endotracheal tube
Several pumps for feeding and fluids
Multiple pieces of equipment: suction catheters, spare tubes etc etc
An adequate safe power supply for all of this equipment
A suitable bed to allow 360 degree access
A suitable room to allow enough space
A roster of intensive care nurses to provide 24 hour nursing care, including breaks, so minimum 6 nurses per 24 hours for 8 hour shifts
A roster of doctors to provide 24 hour medical care
Suitable bins to dispose of medical waste
A transport service to take Charlie home

This is just off the top of my head. Even if their funds would cover this, and they could persuade hospital staff to take on the job, how practical do you think this is really?

Regarding American citizenship and Trump, yesterday they were saying with great belief that Boris Johnson could make Charlie a US citizen.

stopnamechanging

That's awful. I'm so sorry this is just so far out of hand now I'm not sure how it can be reined in.

I'm shocked at the posts about messages from the mum. It's so clear she's in denial to a very unhealthy extent if she truly believes he isn't terminally ill etc. For everyone's sake I hope this all ends soon.

I very much feel for the parents. You'd do anything to have 5 more minutes with the little life you brought in to the world. Sadly, this can cloud what is the right thing to do. They are desperate people but it is right to let that little boy go now.

Whatever your views, it's fair to say that is a situation that no parent ever wants to be in.

They also suggested he claim political asylum in the US...

Seeing as they weren't required to publicly state their reasons to the Great Online Mob....

Not only are they not required to publicly state their reasons, they are not permitted to. Charlie is their patient and they are obliged to respect his right to privacy and confidentiality.

And taking him home is for the parents. Not for Charlie. For him, sadly, he is "home". He's lived there the vast majority of his life

I agree. And isn't it highly unlikely that he'd even be aware of being 'at home', due to the brain damage he has suffered and the medication/sedation he is probably on?

We have a very scared little girl with us who has seen the latest GOSH are murders placards' for the protests today, she thinks that she will die if she goes to her next appointment there

How awful, I've always known it as a wonderful hospital, another example of not thinking of others.

By they I mean CA, not the parents.

Its clear from the DMs that some MNers have received from Connie Yates that the parents have now completely lost touch with reality. I feel for them - it's clear they so desperately wanted to believe a narrative where there was a cure for Charlie in America if they raised the money that they fell into it and now can't get out.

I hope every day to see the news that Charlie's life support has been withdrawn and he's died peacefully. I have to think either GOSH are working through something or Charlie's parents have hit on a short term way to stall them. While this must be a very bad time for GOSH, they know what they are doing and will put Charlie first.

All of you saying how unfair it is on GOSH and the doctors - how do you justify that they refused parents wish to take their dying baby home????

The staff, who aren't allowed to be named under the court order but still are being by CA, are getting death threats. How could they accompany Charlie to his home?

A really cold hearted way of looking st this is whilst GOSH is paying for all the legal leg work for this, it is taking funds away from the hospital.

The case was never going to go well once the media circus got its teeth into it. But now it's a massive financial drain too.

Unfortunately the media circus among other things is likely why it's not possible to take Charlie home or to a hospice. CA have mentioned running the ambulance off the road to get Charlie and take him to a plane. Are they going to send out an ambulance with a heavy police escort? The house would be surrounded by CA and press. Medics would have to run the gauntlet of that.

A MN doctor posted on a previous thread (since deleted) that having gone with ventilated children to allow this to happen at home, it was a small number of staff on the team involved and she had major concerns about the family not allowing the machines to be disconnected when the time came; about difficulties around parents wanting sedation removed to give their child the best chance to breathe and communicate, however she may perceive the child in pain or distress and needing that sedation; what happened if the process took longer than the oxygen etc available for the transit and time period expected; what happened if the child arrested on route and the family wanted resuscitation - without a family fully on board and supportive, the child is at risk of distress, harm and stress in all this. It's a practical and probably uninsurable nightmare.

At this point too, with every part of this now going through lawyers scrutiny, public threats against GOSH staff and them being named online, with the media circus, where would they find the small number of staff willing to go home with the family to enable this, knowing they will be named and every move they make will be open to legal challenge? Which hospice staff team would take this nightmare on?

At least staff at GOSH have professional support, they know the family, they can have control over the environment to prevent the child experiencing crisis and distress - and his needs should be the only focus in all this - and better capacity to handle extremely distressed family who are not likely to let this happen easily.

It's a complete nightmare of a situation and terrible for all concerned that it has been allowed to escalate this far.

If he was to go home who would supervise the ventilator? If he can't swallow he'll need frequent suctioning and presumably gastrostomy. If his parents don't accept that he's teminally ill will they adhere to the same care regimes that he's been receiving in hospital?

Furthermore, if he died at home would any HCP want to be the one assisting with home ventilatory support, or the one who was there when he was extubated? His parents are so involved in the courts and in social media I doubt anyone would be lining up to assist with palliatation at home - especially as his family don't believe he is terminal.

I'm so sad at how many people are actively hating on GOSH and treating GOSH as though they aren't acting in this kid's best interests.

This must be so difficult and parents always seem to think they're right and have an instinctual 'I know what's best for my baby', which in many cases they do, but in this case I think it's clear he's just in constant pain - if he can even feel that. I really do feel for these parents.

Xpost misshavisham

Does anyone know why this situation is continuing when the ECHR made their judgement 9 days ago?
Why don't GOSH follow the judgement.

I feel sorry for Charlie who is being made into a pawn between his parents, GOSH, legal system and CA.
I also feel sorry for his parents and wonder how they they will rebuild their lives now they've been so much in the public glare, not always so positively. It's turning into a reality tv/ tabloid drama :(

The Aysha King case is totally irrelevant to this. There was no suggestion of him being left to die: he had had the surgery he needed, and it was the view of UK doctors that he would have recovered just as well with conventional treatments as with Proton Beam therapy. People keep holding up the fact that he's now recovered and healthy as indicating that the UK doctors were wrong, but the plain fact of the matter is that that was what they always believed would happen. Indeed, the main reason it happened was the surgical treatment he received here.

CA going on about 'parental rights'

Parental rights don't exist.... it's parental responsibilities

Of course thy have bloody justified the decision not to let him go home to his parents, but as with the decision to not let him go to America, they are choosing not to listen & to pick & choose which pieces of information to feed to the barmy army, knowing full well that GOSH aren't allowed to comment for themselves

stop, that is truly awful.

I just wish the poor child could be allowed to slip away peacefully now.

I think the only mistake gosh made was prolonging his suffering. He could have finally been at peace last week.

It's terribly sad but it's quite obvious Charlie needs to be able to let go now.