Charlie Gard case

[LovelyBath77]

AIBU to feel the drama over this poor little boy is not helpful? I read the Pope and Donald Trump were suggesting they help- when several courts have agreed it is in his best interests to let the little boy die with dignity. I feel sorry for him as he may be in pain and it is unfair to add further to false hope for the parents as well. I also feel that many, many people has awful situations where babies die, sadly, for example stillbirths and other cases which are just un-heard and un-noticed and people have to deal with it, so why is there such a huge focus here.

'Charlie's parents, especially the mother, are indescribably selfish.'

Come on Hula - that's not nice!

Gawd, he is looking so ill, poor mite!
The poor poor child and his desperate parents.

He is not 'holding his passport' - honestly, how dare the Sun write that!!
I should not be surprised, really, but that is emotional manipulation and cynical exploitation of a horrible situation at the centre of which is a dying little boy.

Poor wee boy, he looks so terribly unwell in today's photo.
Organ failure might (superficially) look "plump and healthy" to CA activists but sadly, no, he's not getting big and strong. If only that were the case!

I have a huge amount of sympathy for his parents, such a terrible situation to find themselves in. However, I still think they are wrong to continue fighting as they are at this very late stage in Charlie's illness - that's my own opinion only, of course.

Some PP have been asking why the hospital haven't switched off Charlie's life support already, as per the legal rulings... it may be that the would find that incredibly difficult to do with parents refusing to consent to it.

If I were a parent determined not to allow my child's life support to be removed because I believed my child could be successfully treated elsewhere, you can be damn sure I wouldn't leave my child's side for even a minute (unless another trusted relative were present), and pretty damn sure I'd be ready to scream and shout if medical staff tried to push the issue... and if I were part of the medical team, I really wouldn't want to be involved in that situation. It would be a horrendously stressfully situation for every member of staff involved, and the parents I'd guess in these situations, life support is only switched off when parents/relatives do, at some level, consent/agree to it even when they don't support the decision of the courts.

*'Charlie's parents, especially the mother, are indescribably selfish.'

Come on Hula - that's not nice!*

It's not nice, no. What they're doing is not nice. They're prolonging their child's suffering so they don't have to face their own, and attacking the people working round the clock to keep him alive in the process. I think they're behaving appallingly.

Isn't parenthood about doing what's best for your child, not what's best for yourself?

I fully agree Darth and can't imagine a scenario where the parents are ever going to agree. It must be awful for his clinical team to see his body deteriorating now and yet be unable to do what's kindest for him. I just honestly don't see how a compromise is ever going to be reached and don't see where that leaves poor Charlie.

'Oh do stop it, Myrtle. You're beginning to embarrass yourself now.'

Hula you have inappropriately pulled someone up on grammar, called them a fool and imbecile. Such an emotive thread yet you just want to reduce it to a horrible name calling. I haven't embarrassed myself at all. Don't pull people up on grammar its childish and very inappropriate.

Sadly I think this has gone too far for gosh to withdraw respiratory support. I think Trump and the pastor will make this run and run.

They're prolonging their child's suffering so they don't have to face their own

I suspect you might be right. I also worry that they have gone so far in their campaign that they now find themselves unable to back off without losing 'face'. Their pain must be indescribable.

But the decision about Charlie's ongoing management is NOT about their pain. It is about HIS best interests.

Darth I thought about that myself today. I mean ICU is a fairly traumatic ward already and it's quite normal for families to become very distressed. But I imagine they don't usually have too much resistance to end of life care as the families receive the appropriate support. In this instance I suspect there would be.

Bradley Lowery lost his fight today. Fly high little angel .

Thank you for kind comments about my family. One of the real bastard things about mito is the fact that it frequently affects several members of the same family and we were one of the unlucky ones. It's ironic, and I think it's already been said upthread, that some of the more vocal supporters of treating Charlie were utterly against the HFEA's recent licensing of maternal mitochondrial replacement ('three parent babies') which is the only guaranteed way Charlie's parents will be able to have another child who doesn't have the same condition.

I am curious as others are at how the relationship with the medical team broke down to this extent. Sadly, barring some conditions that can be controlled through diet (the ones that are now hopefully picked up through the heel prick test), mitochondrial specialists mostly deal with children who will not survive to adulthood, so are not only superhuman individuals who I admire enormously, but also have enormous experience in explaining horrible prognoses to parents, and supporting them through that journey. Ditto the specialist nurses. On the ward that my nephews were treated on, which was a specialist mito one, it felt like a family, and we trusted the medical staff completely. They cried with us and came to funerals.

'Bradley Lowery lost his fight today. Fly high little angel'

Desperately sad. I saw the news report yesterday with Defoe sobbing his way through the interview. Tragic.

Hula you have inappropriately pulled someone up on grammar, called them a fool and imbecile.

Didn't say that at all. I said her grasp of the case appeared imbecilic at worst. Not the same thing. Comprehension, please, and kindly don't misquote me.

I fear you're right about Trump though; don't even get me started on the fact that the odious little prick is using the poor boy's plight to score Brownie points. He doesn't care about Charlie Gard - he's just using it as a deflection tactic.

And weight gain is very bad as it puts more strain on the body, causing it to burn more energy and risk further damage.

So sad. My ds follows Bradley's fight as he was at the football match where he came out with Jermain Defoe and it touched a lot of people ( Sunderland came to Everton) and he called me in before to tell me.

We all need to realise that there are many other sick and dying children in this country who thankfully have their dignity and privacy respected.
Love to all families going through such heartbreak

Whilst the parents remain committed to keeping him alive, even with the court order in place, how could you possibly ask any of the medical staff to take the steps to (withdraw life support)?

This is precisely the "bottom line" that's been worrying me - and doubtless the one which is now exercising GOSH most of all. Sadly, I honestly don't think Charlie's mum and dad will ever agree to it under any circumstances - it really does seem to have gone that far. So unless the hospital are prepared to go ahead while they're not present - or even while they are but with support in place - it may be that Charlie will be left to pass in his own time no matter what discomfort he may be in

Poor little boy

Pacific, have you seen the letter about the new suggested 'treatment' from the doctors in Italy?
I'd like to know your thoughts if you wouldn't mind.
What I took from it is that just as the US doctor's treatment that was discussed in the legal proceedings, this treatment also has not yet been tested. Even on mice. It has been tested on patients with the TK2 illness but not the same one as Charlie.
They discuss the BBB issue.
It was posted in the Mail and on the CA page. Names have been redacted. I also feel that not all of the letter has been reproduced in its entirety so some vital information could well be missing.

Fully understand if you don't want to comment!

www.dailymail.co.uk/news/article-4673276/Pope-Francis-Charlie-Gard-Vatican-passport.html#comments

It's a horrendous situation. Apparently the parents don't believe he is brain damaged, not in pain and he has a chance of recovery. You can't really argue with that when they are so deep in denial about his condition. Sometimes parents dont always know best. Especially when they are not medical experts and refuse to believe people who are. I'd be tempted to just let them take him at this stage just because of the negative impact it is having on funding for gosh that will impact on other children. The problem is that when he inevitably dies the parents will still blame gosh because they didn't let him go earlier.

Just had a little cry for Bradley, his FB page is full of love, so glad that he got his little holiday last month too.

Gin, I won't pretend that I understand half of that letter, but the fact remains that nothing will repair damage to brain cells.

Imagine how many lives could be changed for the better with the money, time, effort and expertise invested in this case.
I totally understand why his parents are so desperately fighting for him, mind.

Whatever the outcome, they will also continue to suffer for the rest of their days

Stiffy

I think your posts have been incredibly informative and dignified whilst talking about such a heartbreaking situation.

Thanks Pacific.

The thing is River if GOSH did let him go to the US or Italy then they are breaking their own code of ethics by having already reached a decision that this is not in Charlie's best interests.

They are between a rock and a hard place.

The key to unlocking this situation has to be enabling his parents to come to terms with the reality of Charlie's condition, or sadly his deterioration to the point that the decision to withdraw life support becomes irrelevant.

Given multiple court proceedings determining further treatment was not beneficial has failed to change his parents position sadly think the latter is the most likely outcome.

Thank you, Darth.

If I could be cheeky, in addition to GOSH, anyone on here thinking of donating something might think of either the Lily Foundation or CLIMB.

www.thelilyfoundation.org.uk

www.climb.org.uk

I am glad it's not just me struggling to understand that letter. And have any of these doctors actually examined Charlie or seen recent medical records?

I just came on to see if this had been picked up again since the last thread filled up. I saw the letter (about treatment) posted on Charlie's Army FB page, and wondered what others thought of it. I didn't understand the content, but was of the understanding that Charlie's brain damage is the main issue in his decline now, as it is irreversible, no matter what treatment he receives?

If it isn't going to lead to a significantly improved quality of life, let alone recovery, then I think it's completely unethical to "try out" this treatment on him. The letter even says that ideally it should be "tested on a mouse model" but instead "studies" could be performed on Charlie. FFS, how can anyone think that is OK?

The poor boy, left to suffer and deteriorate, while his family and CA try to "save" him. I don't understand what has gone so wrong in this case that medical facts are just being completely disregarded by such a large number of people. I can only imagine his parents (understandably) aren't in their right minds at all, hence refusing to believe doctors and medical evidence.

If it wasn't for the fact it isn't in his best interests, I would say just let them take him, because surely only seeing those treatment fail miserably will convince them that there isn't a conspiracy against saving their son.