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?

It's an accurate description. The reality here is that the only reason Charlie is alive is because he is being kept alive by artificial means. Those artificial means are now being withdrawn in order to allow nature to take its course and for him to die naturally. There are no winners here. it's desperately sad for the parents but equally no doctor takes the decision to withdraw life support lightly.

As for the comparisons to the JW lad, there simply are no comparisons, and to make them is crass in the extreme.

Equally you cannot compare to people going through the courts to fight for the right to die because it is not the same. The right to die bill has to do with the right for individuals to seek third party assistance to actually kill themselves, not just for life support to be turned off at a certain stage.

And again I'll ask the question which no-one has yet answered on any of these threads. For those saying that Charlie should be kept alive so that people can experiment on him for his parents' benefit, would you as an adult want to live like that? Unable to eat, unable to talk, see, hear, in pain and unable to express it, but for some adult in your life to decide that you should be kept alive because they deserved the chance of carting you halfway across the world to be experimented on because they couldn't bear to lose you? I sure as hell wouldn't. So why should it be ok to allow a baby to live in the same conditions just because the adults have an emotional investment? The decisions here have to put the child first, always as hard as that is for the adults who care for and about him.

'But sometimes those closest to someone terribly sick are not the right people to make these awful decisions. I prefer to trust the decisions of those doctors whose lives are dedicated to helping sick children and to preserving life wherever possible, to make the decision in this case.'

There's no way to know how you would feel or whom you would trust until and unless it's your child, and I hope that never happens to you or your child.

I can, sadly, hand on heart say I met one medic when DD1 was in ICU who I wouldn't trust to make a decision about a dying rat.

'All those people who were saying, keep fighting hun, and all babies deserve to live, have not helped the parents come to terms with this terrible tragedy, but have just made it worse for them.'

If you think any parent ever 'comes to terms' with the death of their child, you haven't got a clue.

He doesn't look like is is currently suffering. He looks like a peaceful baby. For goodness sake. He can't cry. Physically can't.

What capacity did you work in NHS settings? Because that's very vague and if it was admin, being a porter, cleaning or similar that still doesn't qualify you to make medical decisions.

He doesn't look like is is currently suffering. He looks like a peaceful baby
Thank goodness we have systems in place that allow decisions such as this to be made on a little more than "this baby, who cannot cry or breath unaided or move or see or hear or swallow, looks peaceful".

It's understandable but the parents are far too emotionally connected to the situation to think rationally. While we can understand their decisions to keep fighting in the courts, It's not best for the little lad and he has to be allowed to die.
You wouldn't have a mad Chelsea fan refereeing a Chelsea game would you? It's nonsensical.
Sleep peacefully little Charlie.

I don't thinking there's anything wrong with the language. Poor Charlie is being kept alive by machines. Switching them off will have the effect of ending his tragically short life. That's a fact. But 'allow him to die' would also be accurate in the circumstances.

Comparisons with euthanasia are misplaced - allowing someone to commit assisted suicide is different to withdrawing the support that someone's completely dependent on to stay alive.

Anyway, I feel so very sorry for his poor parents.

To be utterly crass, the child is just living tissue that is having oxygen and nutrients pumped into it to keep it living.
There is no human being in that body, and never will be.
There will never be any conscious thought, which is what defines a human.
It's a body that will always require artificial sustenance, not a baby sleeping peacefully.

Afraid I can't trust the medical authorities, though I concede they may be right in this case. But it's not like they're known for breaking ranks now is it? See what 'whistleblowers' go thru in the NHS, they get hounded while none of their colleagues raise an eyebrow or show support. Tell me how many GPs or hospital consultants rat on deathtrap care homes when the elderly pitch up to A&E with bruises and dehydration. Clue - it's a round figure.

Yep, the kid who went to Spain for treatment, only for an 'alert' to go out against the family, who were swiftly defamed - shame they can't do an alert against dodgy care homes, eh? Still, public bodies despise the public - see South Yorkshire Police and Hillsborough.

Expat, I'm sorry you've clearly personally experienced some of this awful dilemmas that the Gard's have. But it doesn't mean that yours is the only view. I've been to hospital appointments, sat in emergency rooms and a hospice with someone who has experienced it too, and they don't share your views. Saying you hope it doesn't happen to me is inflammatory and painful, as I've been awake at 3 in the morning thinking the same thing. And before you say it, no I'm not presuming to know how it feels, but I know what people tell me they think. And it would be a pretty poor forum if only those who have directly experienced something can state their views. I'm pretty sure as a regular poster, you've done exactly that. Many times.

It was not just one lone doctor who came up with this opinion. Or even just a bunch of doctors. It was a range of doctors and a number of experienced judges.

I know mine's not the acceptable view, or the common view. Everyone is supposed to say, keep life at all costs. But what about those people who genuinely would prefer not to see their loved ones suffer. Who have been through agonies about what would be the best thing - losing the one they love or not seeing them in pain any more. They are made to feel guilty for having that thought, on top of that suffering they are already going through. They should at least be able to see their struggle recognised, without being shut down.

This differs from the JW case because there was actually treatment available then. Whereas here, the doctor who originally said he might be able to help, now doesn't think he could.

Expat I too have worked with doctors who I wouldn't trust with my hamster (if he was still alive) but in this case it has been many experts including several judges and not one has agreed on this treatment.
Of course no one can know how they would feel if it we're their child unless they have been through exactly the same as the Gards and I am sorry that you went through something similar. But as previous posters have pointed out this is exactly why we have safe guards in place in cases where the parents don't agree with the medical staff.
I simply don't believe that the team at GOSH do not have Charlie's best interests at heart.

These parents have a dying baby we have no right to call them selfish they have been through so much and never had a minute of peace for the 10 or so months charlie has been alive.

'I simply don't believe that the team at GOSH do not have Charlie's best interests at heart.'

I know more than one person who have been very sadly let down by GOSH, to the point where it will soon be a legal issue. Our case did not involve courts, but did involve ICU.

'The hospital should unplug him, put him in the parents arms and say 'off you go then.' They won't do that because the child has had great care from start to finish, though the parents selfish attitude is really annoying me now.'

Yes, it's just as simple as 'unplugging' someone.

'But it doesn't mean that yours is the only view. I've been to hospital appointments, sat in emergency rooms and a hospice with someone who has experienced it too, and they don't share your views. '

I never said it was

But hey, it's easier to point fingers and judge parents and be annoyed with them and blindly believe the medical and legal establishment.

Appparently they were also refused the option of hospice care? That's unforgivable they have every right to choose where they want to take their precious baby for his last hours. Home, hospice or hospital every attempt should be made to accommodate their wishes

Please let's not say anything unkind about the parents neutrogena. They are going through hell.

There but for the grace of God and all that.

I tend to agree with need that this is the best decision for Charlie, but there are no winners in this situation. I seriously doubt that any of the doctors, lawyers or judges involved have any joy at all about the outcome.

I hope with all my heart that I never have to go through anything like what Charlie's parents are experiencing and I refuse to criticise their response to this in any way.

IMO the public reporting on this needs to stop now. Because the reality is that no-one who is reading the accounts from either side is going to be objective - every view expressed by outsiders is going to be based on either personal opinion or experience, none of which are going to mirror the actual reality of what is happening here.

There are going to be people who believe that the parents are right and who will criticise the medical establishments, some because they have personal experience and some because it is simply their opinion, and likewise there are going to be people who believe that the parents are in the wrong and will criticise those based on their personal view based on what they say they would do in the same situation.

And in truth nobody knows because everyone is different, and every situation is different, and every decision is different, and some people would allow the child to have died previously and others wouldn't, and as a result two parents whose child is going to die soon are still going to find themselves in the spotlight after the inevitable has happened, and not necessarily for the right reasons.

They all need to be left alone now to allow the inevitable to happen. We don't need to know the rest. It benefits no-one.

Well said wannabe

Is it possible that the GOSH team don't want to let them take him home on a ventilator because they think that once he's out of their care the parents will simply refuse access to him / not turn off the ventilator / try and get him out of the country . I imagine that he's a ward of court due to all the legal processes .

If there's not a single clinician who thinks there's any realistic chance of success, the parents aren't acting in Charlie's best interests, but to call them selfish is a bit much. They are going through hell on earth. You can see that without thinking this is a conspiracy by all the hospitals, judges and doctors.

Floral I doubt anyone is too concerned about the parents trying to spirit him out of the country. Medical evacuation is not the sort of thing where you can fly under the radar, no pun intended.

'Appparently they were also refused the option of hospice care? '

I have a friend who had to fight for this for her child. It's because of the vent. But they wanted the option for their child to die in a hospice because of the aftercare that's not available in ICU. The dying process can also be handled differently in hospice. BUT, hospices can and will accept patients like this, although of course, the vent support will be ended shortly after arrival.

what Wannabe said basically

what I can say is I feel desperately sad for his parents, they will have had a year from hell and they will need so much help to rebuild their lives again.

I believe Charlie will be at peace, and thankfully wasn't fully cogniscent (emotionally) of what he was experiencing bless his heart

but my heart breaks for them as they go through this and re-building their lives

I really hope they can move on but suspect it will be very hard for them

they are the ones I weep for

This case has dragged on for far too long. Repeatedly the doctors and various courts have said the child has no hope of recovery, yet the parents persisted in their belief that the doctor in the States had some miracle cure.

Come on, they did have a bit of encouragement in that from the doctor himself.

Well my recollection was that the proposed treatment was experimental, so the US doctor needed human patients for his clinical trial. They were always clutching at straws.
The money had been raised to fund the trip, so if there was the faintest chance it could work, I'm sure the doctors here would have given the parents their blessing. The baby has irretrievable brain damage though.