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"

I think that C&C have responsibilities rather than rights over Charlie. But someone with a better understanding of the law will come along shortly I'm sure

Oh no I think I've started an argument with one of CA on the loose women fb post. I've done well so far to keep my typing fingers to myself because you can't argue with stupid, but she might be going for back up

The whole situation is immensely sad. Charlie's parents are grieving for the child they thought they would have and and are clinging on to any sliver of hope they can get. I do wonder if deep down they know he will never get better? If they know he will never smile at them or ride that bike or call them mum and dad. It is heartbreaking for all concerned. I hope there is some resolution on the 25th and Charlie is allowed to die with dignity. How C&C will cope with this though is beyond me. I hope there is a lot of support waiting in the wings for them.

The judge is covering all bases so this case can never come back to court. He must be seen to have considered fully the 'new' treatment, give every possible chance for all the facts, and not speculation, to come to light. He has, I think, been exceptional, in allowing the parents to have more rights than the law allows. But, he does not want even the smallest chance of yet another court case. There have been too many, family court, high court, supreme court. European court of human rights, all have decided that charlie cannot suffer anymore, and not forgetting all the appeals. The judge only allowed this hearing because of supposedly new evidence. He made it quite clear there would be no regurgitating old evidence. No one can deny the parents have fought long and hard for their little one and they love him dearly. But in their grief they have lost sight if what is a life worth living and lack the courage to let go of their loved one. Their relationship may not hold out in the aftermath and that might even be a great fear for them. I have always had sympathy for them, but my sympathy is so much stronger for their child. The parents really do have to put their feelings behind them and spend the last few days with their precious son.

They have refused counselling offered and all forms of help. Visions of the poor parents being dragged away from Charlie's room if the decision to switch off is upheld and those poor people won't allow it are haunting me. I pray that the parents will give charlie and themselves dignity at the end.

I am a lurker and think these are fantastic threads. The GOSH statement is eloquent, poignant and so right. How could anyone think that they don't have Charlie's best interests at heart? Of course they do.
I found an ITV poll interesting, something like 85% of people felt that parents, not doctors should have the "final say" over a sick child's life.
Lord help us. Well, I don't disagree that the vast majority of the time, this is right and parents make the right decisions. But children need to be protected from their parents sometimes, and that is why The Children's Act was such an important piece of legislation. I am absolutely certain that should Charlie get this medication, it will make no discernible difference. At best they might be able to reduce his ventilator settings. It's the wrong thing to do. I understand why his parents are desperate to try everything and are clinging onto every hope. But all this time, doctors think that their baby is suffering and is the terminal stages of this disease. He would die within minutes off the ventilator. It would absolutely astound me if Charlie ended up having the nucleoside treatment.

I do not think Connie should be at the meeting. It is a very bad precedent. I do think she should be able to meet with the doctors, sure, but should not be in a clinical meeting - I fear it will go way over her head, and she will find it very hard. Her presence will change the dynamic and what is said. I'd be interested to see the transcript (am medical).
It's all so sad.

Didnt the expert say in court something to the effect that, he didn't come because he does not have the right to practice in the UK. So I guess now that a judge has invited him and GOSH agree to it, he is legally allowed to enter the hospital in a clinical capacity.

Well, he'll be able to assess Charlie and give his opinion. He will be working closely with Charlie's doctors. He won't have a licence to practice, no. He could recommend treatment (unlikely) and Charlie's doctors would apply to give it. I'm pretty certain there would be hurdles to pass (ethics and stuff) before Charlie could be given the medication - more delays for sure. But I don't think it will come to that......

Why do they believe seizures have caused brain damage, I know several people who suffer from seizures for all their life, which have not and do not cause brain damage.

I thought the scans showed there is no structural brain damage, the damage is at a cellular level which is caused by his illness and not the seizures.

This thread is brilliant. From being on Twitter etc I was starting to think there was something wrong with me for feeling Charlie should be let go. What really bought it home was when his parents wanted to take him home. That would be entirely for them, not him. He'd be moved around, poked and prodded and possibly uncomfortable/In pain - all for them to get their time with him at home. That's when I realised they must have lost sight of his needs over their own. I'm proud we live in a country that has strong laws around the rights of a child. A lot of the American posters don't seem to realise that it's these same laws that protect our children from parents refusing treatment and letting children die, which is a sadly too common occurrence in the US (usually for religious reasons). It's absolutely right that an objective, outside player can step in to consider the child's perspective when parents are unable to.

I'm a social worker so I think that helps how I view the situation because I'm always having to try and see through the child's eyes and communicate this to parents. I often wonder how well I'd maintain my view if I was personally in a situation such as this though.

Because after the 17 days of continuous seizures charlie could not breathe on his own swallow cry. I may be wrong here and am prepared to be corrected.

The seizures that Charlie is suffering from will be different in cause and outcome from that of someone suffering epileptic seizures (which is the condition I think your friend is probably suffering from). Any seizure in a child under one will cause brain damage to some extent – I believe in Charlie’s case these seizures are frequent and significant and so the brain is constantly being damaged.

In the US, is it likely the "absolute rights of the parents" is linked to the insurance type of medicine?

Just thinking. Yes they can force treatment (if they have the money/right level of insurance). But if it were the other way, and my child needed treatment for appendicitis/diabetes/cancer, and I refused and decided I was going to treat with herbs and homeopathy, they aren't going to take me to court and force me? I was wondering if the fact you can't force someone to pay for £1000's of medical care if they can't or won't pay.

Thanks Nellie, wasn't sure but I do know the specialists at gosh are among the best in the world and I would trust them with my child's life. I know doctors make mistakes but there are too many which agree on Charlie's conditions and on his quality of life for them to be all wrong.

That's great that the people you know who have had seizures haven't had any lasting consequences. However there are many causes and types of seizures and for some they undoubtedly do cause lasting, irreversible, brain damage.

Reported another load of posts about baby murderes and the death penalty brigade

Some seizures are very damaging for young infants/children as they effectively wipe the brain of function each time they happen. Infantile spasms for example can look very minor, just a little jerk of the arms or legs, but in fact the prognosis of infants who start with the these forms of seizure can be very, very poor.

A lot of epilepties do not cause brain damage and people can have frequent seizures daily, for years, and be fine, but unfortunately when they occur in children with developing brains the outcomes can be much worse.

@Maryz the case has provoked me to have those conversations too. If I were to end up in Charlie's condition I'd want my DH to switch off life support and have my DS remember me as I was when I was out and about with him, not having to see me inert in a hospital bed indefinitely.

Clearly though Connie can't let go of the idea of Charlie having that 'normal' life. It is desperately sad.

I was thinking about the fact that Armstrong argued that CY had a right to be in the professionals meeting on Monday because she has as much expert knowledge as any medical professional-or something to that extent. I think it was a really unhelpful thing to say because CY will now be believing that she is on a par with the medical professionals and she may well not like or not understand what they have to say and not be able to accept it. It is very sad.

The whole case is dreadfully sad and it's playing out so publicly, like an awful reality TV show, and in this post facts era on the internet there is so much mis-information and lack of understanding being spread around, and it's been particularly scary to see the masses of misinformed come together to form an Army!

The Trouble is, in society today all over the world people believe that they have the 'right' for this, that and the other. Peoples over inflation of their importance above others have led to the situations today. In america the parents 'rights' over their child's 'rights'. Children are not property, they are human beings in their own right. Therefore equal to the parents. In Charlie's case the parents feel it us their 'right' to dictate what is best for their child. They have forgotten Charlie's rights. I do not blame then for this because as I said, the society around them acts like this all the time. We have indeed become a selfish world. Road rage is a good example, queue jumping etc. Nowadays you can sit a long time waiting to get out of a side road onto a main road. Courtesy is long gone. You go to the doctors or hospital, there us always someone going on about his long they gave waited and they should take priority etc etc etc. When you think about it we all do it in some form or other, put our rights before others.

@Maryz

We've had conversations too. What it has thrown up is that I do not trust me if push should ever come to shove. When it is hypothetical, I know I would not want to let DS suffer an existence. But in practice... I might be one of the minority who struggles to let go.

Which is why I want to see the "village" (the one you need to raise your children) empowered to step in and save me and DS from me should it ever happen to us.

I don't want to be allowed to fall at the final fence of child's needs priotising of parental wants. I want those who are not in the throes of abject grief, horror and denial to step in with their rationality and take the reins if I cannot do for my son what he needs me to do.

I would hate them for it, probably never forgive the world at large and rage for a lifetime. But I still want them there with that ability to step over my lack of capacity, for the sake of my son.

Because that is the best I can do for DS. Know the potential of my limitations and as a direct consequence of that take a position of supporting the framework that would stop my limitations being a price my son has to pay.

edit

I don't want to be allowed to fall at the final fence of child's needs to be prioritised over parental wants

@maryz eloquently put and that is what our justice system is trying to do for charlie.

Sostenueto, I do not belieive you are critisising the parents, we have all asked genuine question but no critisim.

Before this weeks hearing i was very sure in my own mind that charlie should be allowed to pass away. But after reading the tweets from this week, and the fact that the judge isn't just dismissing this new evidence out of hand now I'm not so sure. He must be satisfied it is new evidence, or he would have dismissed it straight away, he said as much. So while i fully support GOSH, if i truly believed my child wasnt in pain and an eminent world renowned expert in my childs condition told me there was hope, i think i would probably do whatever it took to force the matter back to court as well. I don't agree with everything that Chris and connie have done but forcing the court to take another look at new evidence isn't necessarily not in Charlies best interests. The judgement was made In April based on the evidence known at the time. Now there's new evidence, charlie deserves to have that considered too.