Statement from CG’s parents:-

Tragically, having had Charlie’s medical notes reviewed by independent experts, we now know had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy

If they truly believe this and this is not a statement written for them by the american doctor that will be a lot of anger to be carrying around. If you believe GOSH, and I have no reason not to, this was hope based on thin air. It is almost worse than the lad receiving useless treatment that failed. You only hope that in years to come they will see the offer of treatment for the false hope GOSH thinks it was.

As the parents they will be stuck between a lifetime of anger at the GOSH for preventing their son getting life saving treatment or huge guilt that their actions made their little lad suffer when they read :-

Statement from GOSH:_

Its fear that his continued existence has been painful to him has been compounded by the Judge’s finding, in April, that since his brain became affected by RRM2B, Charlie’s has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering.

What a horrible situation to be in.

The problem is the medical evidence pointed in only one direction – the baby was badly brain damaged, blind and suffering pain.

Hope vs science. Tragic.

And Charlie’s Army, together the the dodgy Prof, only served to create more hope where there really was none. They should be ashamed.

he would have had the potential

to me is a nasty, weaselly statement presumably written by the doctor or lawyers

What potential? 1 in 10? 1 in a million?

Impossible to dispute, even the sickest people sometimes get better and it’s impossible to say why.

Not ones with severe brain damage. Hence it is a false statement, unless by “sooner” they mean before the court case even started. I am of course relying here on the evidence of GOSH that he was already severely brain damaged in December, but then I don’t believe anybody has refuted that with any real evidence.

TBH I didn’t understand how this case got so much airtime compared to other things going on in the world, I have assumed the parents have money and this is why it keeps circulating, because whilst it is tragic and saddening for all involved, I dont see how its a national issue, although some of the comments from the parents seem to be made to insight a riot with their support crowd outside the court and via social media.

I was more shocked in the last few days to hear that staff of GOSH have been getting threats from the public and then reading the above statement:

Tragically, having had Charlie’s medical notes reviewed by independent experts, we now know had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy

I really hope the parents can now take the time to mourn and reflect and I would hope eventually thank or apologise to the staff of GOSH.

Presumably their lawyers are still working for the publicity value?

http://www.bbc.co.uk/news/uk-england-london-40716292

It does seem somewhat crazy to go to the courts over this rather than try and work with the people you need to facilitate things.

Home ventilator care is very expensive and difficult and slow to arrange. Its also not usually the hospitals responsibility. You need 24 / 7 nurse cover from appropriately trained nurses – they are just not available at the drop of a hat.

Good god, just let the poor wee guy die won’t you……..

It does seem somewhat crazy to go to the courts over this rather than try and work with the people you need to facilitate things.

There seems to have been a breakdown in trust between the parents and Great Ormond St, very unfortunate but probably a likely outcome after a protracted legal dispute

They accused Great Ormond Street Hospital (GOSH) of putting “obstacles” in the way of Charlie’s return home.

However, they said Charlie’s parents had not wished to use the services of a mediator and had proposed no clear plan.

She said the hospital wanted to fulfil Charlie’s parents’ “last desire” but that providing intensive care to Charlie outside a hospital setting was not simple.
The judge said: “If going home can be achieved within reason then I would like to achieve that for them.”
GOSH said that as far as it is aware, invasive ventilation is only provided in a hospital setting.
“It requires air to be forced into the lungs. For reasons that are obvious, that process and the correct, safe positioning of the tube have to be monitored by an ITU trained nurse at all times, with an ITU doctor on call and close at hand.
“Those resources cannot be provided by GOSH to Charlie at his parents’ home.
“GOSH is aware that there are other practical problems one being that the ventilator does not fit through the front door.”

They do sound like pretty reasonable obstacles. In the nicest possible way I can’t imagine GOSH don’t want shot of the family as much as the family want to get away from the hospital. Damn the doctors and their desire to fulfil the best interests of the child.

This is not like a terminal but aware and cogent patient going home to be at peace and comfortable for their last days. Sadly this is is only for the well being of the parents as the child will be unaware where he dies. It just needs to be done as painlessly as possible. Not saying that their needs are not important but they can’t be confused with the needs of the patient.

This might sound a bit gauche, but how have the parents been paying for all this?

Their statement last night thanked their legal team for continuing to work for free. I’m guessing jobs have gone by the wayside for months.

Spot on. This is the point where it has become about them rather than Charlie (it seems they have finally accepted the diagnosis, so they should know that), and somebody really needs to advise/tell them to stop.

We certainly do home ventilation in Edinburgh. On stable patients tho I believe. I only know ‘cos I met one of the nurses from the home ventilation team.

D’you know, I did used to hsve sympathy for the parents but that’s long since gone. What possible difference does it make to anyone other than them where the poor little sod dies? It’s totally become about them and not him.

He’s a postman and she’s a carer – don’t know why but that surprises me.

Pondo have a plus one for the first post.

somebody really needs to advise/tell them to stop.

I suspect grief will do lots of things to people

TBH I dont envy them and i dont blame them for fighting every day to try and save their son ,they have been and done as all parents should

As for letting him go home deaths are for the living and if it gives them some comfort and he can pass peacefully and painlessly then I dont see what it has to do with us

We are not care him for him any more we are easing his passing off the mortal coil and if his parents wish is for this to be at home then we should try and facilitate it.

Had just started to read about this, and felt a bit heartless with what my gut feeling was. But glad that STW seem to be in agreement. Feel sorry for the parents, but what is about to happen appears to have been inevitable for some time.

TBH I dont envy them and i dont blame them for fighting every day to try and save their son ,they have been and done as all parents should

It could be argued not letting your child suffer is one thing a parent should do, JY.

true but they see/saw it as fighting for his life.

I did used to hsve sympathy for the parents but that’s long since gone.

Their child is dying.

Their child is dying.

Yes, & the best thing they could have done for him was to accept that.

I still have sympathy for there loss but I don’t agree with their actions at all. I can’t imagine being in their awful situation but I’d hope not take it so far.
People have asked who is paying their legal fees, what about the GOSH / NHS legal fees? I don’t suppose their legal team is doing it for free? If it was practical to ventilate at home and they had an ITU team from GOSH is another child going to suffer or even die because that ITU team is not at the hospital?

Yes, & the best thing they could have done for him was to accept that.

Easy to say.

I think it’s very difficult to put oneself in the parents’ shoes. I don’t know how I would react to the immense stress they’ve been under. There are plenty of villains in this story; the gutter press, Trump, the pope, the Professor, Charlie’s Army paramilitary branch etc and for my money, any anger should be directed at them rather than distraught grieving parents.

Easy to say.

Sometimes the right thing to do isn’t easy.
EDIT The problem is that if you are saying that distraught, grieving parents can’t be expected to make a rational decision in the best interests of their child (over the course of several months) then you are making a good argument for excluding them from the decision making process.

Their child is dying.

Totally get that, I really do. But the key thing is – he is dying. He is going to die, and very soon, despite what that money-grabbing American charlatan has promised them, despite what the Pope and the American nut-job pres have said. Charlie is dying, and it’s horrible, and it’s a tragedy, but it’s going to happen, and very soon, and there’s nothing they can do to stop it, nothing at all. I wouldn’t wish that on anyone.

But they have a choice. They can keep fighting and trying to prolong it, against all hope, they can keep railing about how GOSH are being obtuse and blocking their wishes, or they can accept the inevitable – what difference DOES it make where he dies? Has he ever even been to their home? I am not and never will be a parent, so there’s a sizeable aspect to this I’ll never have a full appreciation of, but my dad died at home and my mum died in hospital, and I can tell you without fear of contradiction that there is ****-all comfort to be gained from one over the other. The person is the important bit, place matters not a jot.

and GOSH have tried to facilitate it – but they’ve decided that they can’t for what seem quite reasonable reasons.

All the way through this thread I’ve expressed my sympathy for Charlie’s parents and refused to condemn them in any way, and that’s not going to change now. However going to court to try and force GOSH to allow Charlie to go “home” (it might be their home, but it’s never been Charlie’s home) just seems a ridiculous thing to do. Undoubtedly they still have serpents whispering in their ear – I’m inclined to think that those serpents not only don’t care at all about Charlie, they don’t care about his parents either.

I will be extremely surprised if the lawyers acting for Charlie’s parents don’t extend their run of losing at every single stage of the legal process. I presume any publicity is good publicity.

Yes it does seem like people are not working in the best interests of the child here. It seems like GOSH are and have been very careful to explain exactly what is going on and why. A combination of vested interests (that the nhs isn’t working perhaps) armchair experts and a lazy press. Worth pointing out how many sick kids are losing out due to the cost of this case and the time being spent hauling clinical staff off to court.

I was an adult itu nurse for 12 years, and in that time I saw 1 patient directly transferred home to die, and they were unventilated! Transferring a ventilated punter on site is fraught enough, never mind to another facility – home would be a nightmare! Poor kid probably wouldnt survive the transfer even! And exceptionally resource consuming – how many others would or have lost care due to this protracted case and eating of money/ staff/ time?
What makes this case so special that he should receive all the resources to go home when that would never be an option for the majority of other patients/ families? Unfortunately it’s not feasibile and GOSH have clearly rationalised this, they need to be able to get on with their job and give this poor wee lad the best end of life care he deserves, in my opinion.
It is incredibly sad for all involved but as above it needs to be about the boy now and not his parents. Family involvement is always welcomed as it often helps them deal with the after effects but ultimately the decision makers are the experts ( I know post brexit we’ve had enough of them!) Or the courts as in this case.
So sad

https://www.theguardian.com/uk-news/2017/jul/26/charlie-gard-can-be-cared-for-in-hospice-his-parents-tell-court

one step forwards, one step back – if he’s going to die and they’ve accepted that, why prolong his suffering?

could we not say that about anyone who needs to go to a hospice?

Yes, except the impression being given is to keep him plugging away on a vent which is frankly cruel and not being done in his best interest but theirs which unfortunately is selfish of them.

could we not say that about anyone who needs to go to a hospice?

I guess most people who go to a hospice are receiving palliative care to make them more comfortable but receiving no treatment to prolong their life. You would however have to make a specific act to actual end their life – a morphine overdose for example which (rightly or wrongly) is considered unethical. You (and they) are effectively waiting for nature to take its course and to die. It this little lad’s case they are having to make positive steps to keeping him alive and withdrawing those will end his life pretty much instantly. It’s quite different imo. I can’t imagine there are many people of any age that are removed from a hospital in a coma to have their ventilator turned off at another location.

Last sentence – Fair point it probably is extremely rare

Interesting summation and view from across the pond on The Conversation.