Charlie Gard 9

[muckypup73]

Hi guys new thread.

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

On balance I do still think that Charlie should be allowed to pass away but i can't get on board with saying the parents shouldn't have forced this back to court. If it wasn't new evidence the judge wouldn't have entertained it. He obviously feels there is value in this expert examining charlie and in my view charlie deserves to have the new evidence considered. It will all come out at the end of July when the case is heard and in the meantime the morphine will ensure charlie is comfortable which is one saving grace. i don't think the outcome will change because by the sound of it there's nothing that can be done for charlie's actual quality of life but im not am expert don i can't possibly say. i do think its right that legal process is being followed and i can't judge the parents for forcing it back to court when a world leading expert is willing to stand up on their side and say he thinks he can help. We don't actually know much more than what the tweets said along with speculation.

They just can't let go.

But no matter how much you want someone to live/not be ill there's no amount or prayer or wishes in the world that can fix it. Or medicines (traditional, modern or 'breakthrough').

I'm sure many of us here have been in the situation of watching someone close die. They aren't bloody well 'fighting' either. It's not like that. You don't 'win' or get defeated because you didn't try harder enough or were determined enough.

I think we also need to remember just how many Medical professionals have agreed with the stance of GOSH. they have been in contact with all the big children's hospitals and experts in this country all of whom who have agreed with their findings.

This isn't simply a case of one Dr not listening to the parents concerns. this is very much a case of the parents not wanting to believe what multiple professionals are saying.

And one doctor remotely suggesting that he can help (without examining the patient). What happened to the 7 doctors?

Sirzy, I agree with this.

originalbiglymavis, do not know what happened to the other 7 doctorsand the one thats comming was not told the full extent of Charlies condition.

www.mothersinstinct.co.uk

Please don't jump on me - I'm not saying that Connie is right necessarily in this case. I'm just saying that she does have a place in Charlie's care and should be listened to. Yes she probably is deluded as to Charlie's condition and in massive denial - I definitely can't blame her. I think the right thing is probably to trial the drug for a week and then let him go.

Valid points user. But who is going to look after Charlie if the yet to be tested, treatment doesn't work? The parents cannot look after him 24/7 because of his high dependency on life support. If gosh had any worries about money they would not have kept him on ICU at a cost of £1,300 a day for the last 9 months. The leading doctors, who are world renowned cannot all be wrong and nor can all the courts. The judge will not lightly agree to treatment, untested even on mice, with unknown consequences to Charlie without real EVIDENCE that it will improve Charlies quality if life beyond just coming off a ventilator. It is true you cannot reverse catastrophic brain damage. And finally, the human race CANNOT cure everything and sometimes you have to accept that as I, as a terminally I'll person, has.

Stardust from what i gather the drug would need 3 months to take effect. They either do it for 3 months or not at all.

Mothers instinct is all well and good, ds wouldn't be alive without it.

However this has long since passed the point of being about mothers instinct. this is now the parents burying their heads in the sand and seemingly ignoring all the medical evidence. That's not healthy and actually dragging this out as is happening is only going to make things increasingly harder for them.

Stardustandicecream and if he has the treatment and does not improve and she still doesnt want to let him go??? what then??? find another court? find another experiment? it could go on and on and on, they all agreed in the last court case, even the parents that charlie was severely brain damaged, you cannot reverse that.

I wondered if the other 6 are considered less expert than the US doctor and GOSH consultants and therefore because there are two differing standpoint from the strongest experts in the condition, their view is not an informed? Could be wrong of course but many many other consultants in the UK and Spain (?) I believe have been consulted and concurred with GOSH, I don't think they will be consulted either.
Whichever way this goes, Charlie has had the benefit of the very best expertise into his condition on the planet.

I've no experience in medicine but in other fields have known experts to line up to give evidence and expert opinion on behalf of people when they have felt very strongly. Why have the 7 doctors not done this? Or at least done their research and given their best opinion.

The Vatican doctors just seemed to be saying 'poor wee bairn, we can give him a bed here...'. not that they can actually treat him (maybe they hope for a miracle).

I do agree with you. I just can't shake that bit of sympathy I have for them.

Stardust because Charlie's condition is a cellular one the treatment will have to be lifelong. Cellular mean cells. The Mick are present in each cell. A cell divides, Charlie's mica are genetically faulty. So ever time the cell divides that mica us faulty in ever cell so therefore treatment will be for a lifetime. As I previously said none knows FOR DEFINATE what the side effects would be or what the advantages will be.

Everyone must be so exhausted.

I personally think that actually examining Charlie's neurological status is essential. Imaging, EEGs are important but a clinical decision about administering an experimental drug shouldn't be made without going back to basics : i.e. written documentation of his progress in hospital and a careful examination. Some children can have MRIs with obvious structural changes but present well and be making good developmental progression and vice versa.

Only a thorough neurological exam will give information as to his level of responsiveness and degree of interaction (if any). It's entirely appropriate that the US doctor examine Charlie - or do so in conjunction with one of the paeds neurologists who have already examined Charlie - in order to clarify just how neurologically impaired he is. It's not possible to directly extrapolate from an MRI the degree of functional impairment, especially with a mitochondrial disorder where the deficit is at a cellular level only. It seems crazy to me to recommend experimental treatment without actually examining the infant.

We all have sympathy stardust and just because some feel he should be let go does not mean we do not care, in fact, I would say it is because we care. No one says you should not symphathise stardust or agree with what others say. You are entitled to think and feel as you wish. In fact we value that. It makes us all look at different perspectives enabling us all to learn from it. Stardust your opinion is valued.

I think there are a few more CA supporters on here now, and I said I would never do this but here goes (given the general lack of knowledge concerning medical research).

Medical research is more failure than success. In many instances we learn more from the unexpected than the anticipated results. The researcher coming over for Charlie (if you actually read, study and analysis his research) is actually not saying he can help Charlie improve his quality of life. It only means that Charlie will be more aware of some stronger sensations (the strongest being pain) so Charlie will only be more aware of pain and nothing else.

The American research is in such early stages that it is the equivalent of giving an aspirin to a cancer patient to cure them. And it is so wrong to do that to Charlie. IF the research was further advanced then I might have said worth a shot but not now and not in this case.

Meanwhile Charlie is still here and suffering and it is now time for him to pass (I got a PM from someone and I just want to say here - yes I have walked in their shoes so yes I do know what I am talking about thank you so very much)

Sorry that sounded a bit ratty but I am trying to respect all view points (although a little difficult when you read some things )

Hope i haven't upset you nellie

Right bid farewell for a bit family now here. Be back later. Peace to all.

NellieBuff, I agree and these threads have been very level headed and balanced I hope they do not end up getting deleted.

I don't know the medical side of it but I do know a mothers instinct should ALWAYS be trusted.

I don't. I know of a child whose mother's instinct was that he shouldn't be vaccinated. He caught measles, developed horrendous complications and died.

Sostenueto. There are currently thousands of adults in the UK who need 24/7 care and who - in some cases - have expressed a verbal desire to be dead if they needed 24/7 care. My father was one of them - he recently die after many years of distress and confusion due to dementia. It took him a week to die. During this, he had too little pain relief and was not in a proper medical/hospital environment. Like Charlie, he was not able to communicate or express his wishes.

The only substantive ethical difference between Charlie and my father is that my dad could breathe unaided, my dad had expressed a verbal desire to be shot in the head if he ever got dementia, and he wasn't a cute baby.

The absurdity of this is the amount of time discussing in court Charlie's right to die - a right denied to thousands of people across the country.

Given we have a precedent in the UK to allow people to maintain near-zero quality of life for years via sometimes complex 24/7 care and medical interventions until they eventually die of something not directly connected to their condition (e.g pneumonia, salmonella), Charlie's parents have a better case than most to keep him alive.