to think that the words the BBC used about Charlie Gard were upsetting and wrong?

[PyongyangKipperbang]

The reporter said "......whether ending Charlies life ....."

No one is ending his life! He is being allowed to die and that is a very different thing.

Surely this language shouldnt have been used to describe the withdrawal of life support?

I think they should allow the treatment in US.

Why?

Please explain why you think its a good idea bearing in mind that even the doctor who originally said he would treat Charlie has said that it would make no difference.

This article from the Lancet really does make sense.

You know, that peer-reviewed scientific journal.

What people don't seem to realise is that one doctor makes a decision, and everyone else jumps on board because professionals cover each other's backs and stick together. No one wants to be that voice going against the rest of his peers. Not unless they are 100% sure that the treatment will be life-saving, but that's never going to happen.

They should let the parents do this, it's wicked that they don't. The video of Charlie shows him kicking and gurgling like an other baby. The mother has taken photos of him with his eyes open, when the 'experts' say he never does. Give them a chance for pity's sake.

A disabled person can want to live because they have quality of life. A ventilated person can want to live because they have a quality of life.

Charlie hasn't kicked and gurgled in ages.

The doctors didn't say he NEVER opens his eyes. He rarely does so. If in 72 hours he opens his eyes once and I post a video of it that doesn't make it true.

And that article was written by a philosopher. With no medical training. It's a thought experiment. A lot of 'what ifs' by someone with NO medical knowledge esp of the fact that the doctors administering the nucleoside therapy have said it won't work. I mean, to be flippant, my MIL believes that garlic and turmeric cures most things. Why don't we prolong his life to administer some? In this case it is no different.

Also the parents have hopelessly contradicted themselves. They want to argue he is conscious i.e. not brain dead and as proof of that they argue he feels pain when a heel prick is done. So are they arguing that ventilation is not painful for him??? I have stood by and watched my baby on ventilation. I assure you he was in a LOT of pain.

A chance to do what?? To take him to America in pain for a treatment that has never even been attempted on mice and that the doctors (the American ones) say won't work? Is that not for the parents' then rather than for Charlie's benefit?

Also he can't be taken home and to a hospice because I believe they haven't agreed to a DNR.

Charlie's life support will be turned off today. Maybe now is the time that discussions around whether it should or should not be stop.

They're now sharing his MRI results. How can they not read what's in black and white?!
They're trying to say it shows improvement. It clearly says they're the same as before. No worse. But no better. Defiantly not a good thing!
I genuinely fear for the amazing doctors who've helped so many people.

I wonder if they wish they'd never admitted him.

Is that what these idiots want?
Maybe from now on they should just leave babies to die outright for fear of a psychotic army attacking them.

There is no good reason to deny the family delay for family to come and visit, or for them to take him home.

All this nonsense about people hijacking ambulances and taking him to airports is daft. The police could stop that at any time, for cry out loud.

If they haven't signed a DNR they can't take him home and no hospice will take him.
As a pediatric nurse on the thread explained as soon as he is off the vent he will be struggling enormously and in a great deal of pain. There will need a lot of specialist medical intervention to keep him pain free from that point on. This is not possible if the parents haven't signed a DNR.
Also remember this is the court's decision to keep him in hospital.
Finally, their comments about the cot/bath etc while heartbreaking makes one think that they haven't fully processed (and who can blame them) what coming off the ventilator looks like.

As I said, I have witnessed 3 children dying a few feet away from me in a neonatal ITU when their ventilators were switched off and it is not nice. And the doctors don't do it for fun.

Doctors absolutely do get things wrong. They do sometimes pursue something in a certain way because they are convinced that's what's right despite the fact that it isn't. I have met lots of great doctors and some utterly terrible ones. (Honestly I don't much trust the Lancet and peer review these days either. The Lancet have damaged their own reputation hugely in recent years and peer review isn't always the robust process one assumes it is. See Tuller and the PACE scandal if you are interested in learning more)

Anyway none of that is really relevant here because this has gone through the courts and clearly all agree on what is best for Charlie. I feel so terribly sorry for the parents but more so for Charlie.

Wonderment, it is a terminal disease without a doubt. He will die from this whatever happens - ventilated or with other support. There is no hope. His mitochondria do not function and there is not enough energy for his body to function. Nothing can change that. It's desperately sad but this is what it is. The best that the nucleoside treatment could possibly do is prolong his life in a desperately ill state. It is likely to achieve nothing positive. He need to be allowed to die - his poor little body is trying to. He hasn't been able to breathe from himself for months and months.

Withdrawing treatment is not in itself ending a life. However, it is acknowledged that treatment is being withdrawn because treatment is futile, and because life depends on the equipment that is providing the mechanical function of breathing, it is inevitable that life will end.

Well, now a decision has been made.

There is nothing you can do about it.

There is one thing you can do something about, however, and it concerns you. I urge all of you with elderly parents to obtain Power of Attorney in Health and Welfare over them. They have to be able to grant this. Why am I saying this?

Because if you don't, you will likely be in a Charlie Guard parent situation with your own parents. You see, if you don't get POA, then once your parents are deemed to have lost mental capacity, then the State legally assumes ownership and control of them. You, as Next of Kin, get nothing, no say at all. Just to make this clear... Social Services will own your parent. You don't. And take it from me, what you've heard that's bad about them... it's worse.

And you will be taking photos of your parent to demonstrate they're okay and everything and facing a hostile and skeptical set of authority figures. And should you ever make a complaint... 'Do you have Power of Attorney? Well you can't complain on your mother's behalf then...' Utter rubbish, but we've had that from the local primary care trust and Local Govt Ombudsman. it's always worth a try as far as they're concerned.

If you don't know about POA, it's because they don't want you to know. Just diagnosed Parkinson's, dementia, ffs get POA or you have all the responsibility and none of the power... just as they like it. That's a recipe for stress.

Perfectly put ! X

@Wonderment

This situation makes me wonder how much money has been spent by GOSH on legal fees, and how many other children won't get the care they need due to funding/time spent in court by doctors? If I were to donate to GOSH, I would hope that my donation would be spent on saving sick children, not legal fees to defend their decisions against parents who refuse to trust the experts. I know that sounds harsh, but there's plenty of other babies/parents that are going through equally horrendous situations that need support too.

My heartfelt sympathies to the parents who look so weary and tired. You have done all you can, - you have taken your fight to the end of the road and I commend your courage for keeping going as long as long as you could. I like to think I would have done the same. You have done Charlie proud.