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.

'Myrtle - why should I?I am genuinely shocked at how cynical a photo that is'

You are attacking the parents, CA are attacking gosh. You really cant see you are just as bad.

Yes disagree with the media or agree in your opinion life support should be withdrawn but there is no need to use terms like 'grabby'. Its so distasteful.

No time to rtft but has anyone linked this astoundingly sensible article in the Independent, yet?

www.independent.co.uk/Voices/charlie-gard-gosh-great-ormond-street-hospital-life-support-pope-donald-trump-a7827276.html

Myrtle, I've worked in ITU, I seen loved ones die in ITU and I have broken in to tear simply entering a paediatric ITU.

Of course a critically ill baby like Charlie should always be offered intensive care treatment until their condition is fully assessed. Goes without saying.

Can we remind ourselves quite how difficult that whole situation must be for ALL concerned, including the HCP and the other children and families who are currently on ITU?

Myrtle it seems perfectly reasonable to point out in a measured way that the parents talk much more about their own needs than they do about Charlie's.

As for the wider damage they're doing, forget it - no sense of that at all.

ErnesttheBavarian Nobody needed to "find the right church" because the photo is indeed of them in GOSH chapel

And surely it's obvious why this hospital chapel above all would have the verse about "suffer the little children to come unto me" on its altar?

I have nothing but sympathy for all parents of critically ill children.

I am also thinking of how hard these discussions must be for all parents who have lost a child or have looked after/are looking after a severely disabled or critically ill child.

There but for the grace of god go I.

'Of course a critically ill baby like Charlie should always be offered intensive care treatment until their condition is fully assessed. Goes without saying.'
Yes but my point is once you have a brain damaged, not brain dead patient on respiratory support it will always be so difficult to withdraw without consent.
As you do have clinical experience then do you not think in the absence of consent it may have been better to agree not to escalate to further organ support rather than take it to court?

'it seems perfectly reasonable to point out in a measured way that the parents talk much more about their own needs than they do about Charlie's'
Yes I agree. In a measured way. Grabby doesn't sound measured to me.

"White Do you honestly think that all parents always act in the best interests of their children? Sadly, there are lots of parents who neglect or abuse their children. There are also loving parents who genuinely believe that they are acting in the best interest of their child by mutilating their genitals or marrying their 12 year old daughter to a 40 year old man or having them whipped to exorcise a demon or refusing a life saving blood transfusion. Should we just stand back and let this happen because parents always know best or should we step in to protect these children?"

No I don't believe that all parents always act in the best intrest of their children. But I belive Charlies parents are.
This is about disconnecting life support - very very different to refusing saving life blood transfusion. In this case parents want him to live! And I 100% believe that in a life/death situation it's the parents who should be deciding when to stop life support.

I have been following this case for months now getting more and more confused and shocked with each court ruling. I have nothing to do with CA army. My view is that something is very very wrong within the whole system. This should have never gone to court. Hospital fighting the parents on disconnecting life support while there is hope and valid treatment (experimental or not) elsewhere is just wrong!

I simply don't get why so many people are attacking parents over this.

I also see an analogy with Asyha King as it's another case where parents are treated appalingly by NHS.

Yes I agree. In a measured way. Grabby doesn't sound measured to me

I will try and explain what I mean in a measured way. Charlie's GoFundMe was set up in all good intentions, to raise £1.2m so he could have Nucleoside Therapy in the USA.
This has been raised, plus a further £800,000 at recent calculations.

A hospital in the USA has offered to administer his treatment free of charge.
Which means that even if the court overturned the decision, he will be treated free of charge.

I understand and empathise with the loss of parents financial security when faced with a child being in hospital long term.

But when the treatment has now been offered to Charlie free of charge, when the couples lawyers are working Pro Bono, and when there is almost £2million pounds, raised at present, why is there an urgent necessity for his family to sell phone cases, air fresheners and sweetie cones with his face on, and why have they decided to sell their story and have photos taken by a publicist to sell to the media?

I am not insinuating anything, I am just genuinely wondering why money is still said to be needed "for Charlie's fight"?

Because the little boy needs to die with some dignity, his suffering needs to end, his parents are selfish and doing whats in their best interests, nobody elses.

Maybe they should use the money from their funding page to give back to the Nhs for all the treatment, it could go towards saving other childrens lives.

kmc1111 that is absolutely disgusting.

I think the merchandise is more for raising awareness of the case rather than for profits. Might be wrong.

Raising awareness of WHAT???

A case where umpteen doctors and experts have ruled there is no hope. A case where three courts have agreed with those doctors and said the parents are in denial. A case where there is no treatment that will cure this poor baby.

The media have been falling over backwards for weeks with this case. Trump and the Pope have spoken about it. There is absolutely no need for any selling of merchandise to raise any awareness.

And I 100% believe that in a life/death situation it's the parents who should be deciding when to stop life support.

When is the key word not if. Unfortunately these parents aren't doctors. They are ordinary emotionally overwhelmed people. This isn't about what is best for them. It's about what is best for Charlie. The doctors have had the legal right to withdraw treatment for over a week now. The fact they haven't speaks volumes about their compassion and I would imagine intense regret at the situation.

Myrtle, I absolutely never used the term grabby, and that has not crossed my mind. I do not, and never have felt that there was a financial gain element to their behaviour at all. Nor have I implied anything of that nature, either online or in RL - do not attribute other people's comments to me.

It hadn't occurred to me that that might be GOSH chapel. (duh) All the hospital chapels I have ever been in have been very neutral and non-demoninatinal. makes sense though, although I think many people misunderstand the meaning of the verse, but that's beside the point.

I haven't commented thus far, and I feel terribly sorry for the parents. I just found that photo so upsetting and cynical that I commented. The main point of my comment being how appalling and irresponsible I think the media is behaving.

kmc Ouch. As much as I disagree with the way the parents are handling this at the present time, I think that comment goes way past what is appropriate. Please, lets not have this descend into anything nasty. We're having a reasonably respectful conversation about a highly emotive subject, I'd hate to see this thread deleted too.

I think the merchandise is more for raising awareness of the case rather than for profits. Might be wrong.

That may be the way CA are telling it, but it's rubbish. There couldn't be more awareness of this case! There is too much. Wrist bands I could just about stomach but air freshers and the like!?! Someone woman was even banging on with "What about baby bottles and dummy clips?"
It's distasteful and it needs to stop.

I agree Shatners but it's what they have chosen to do. It has worked to some extent. This case is known worldwide now.
Im sure the merchandise was available long before Trump and the Pope got involved.

But every medical expert involved on the ruling agrees there's no real prospect of any meaningful improvement.

My baby sister was severely encephalopathic and had blood results incompatible with life. We were told she will definitely die. They were dark days.

But she survived and has grown to be fully NT, leading a normal life.

The medics really don't have a crystal ball. They're great, but they don't know everything. Most of what they do know is what's been passed down from someone else anyway! At least that is often the case for people with very rare conditions.

Annandale my post regarding the amount of specialist care which goes into keeping Charlie on life support was in my mind, because of a case a few years ago with a poor girl called Charlotte Wyatt.

Her quality of life was very low, in constant pain, and Doctors said she had days or weeks without treatment, but could have months or years with it, but she would be profoundly disabled, in pain, require round the clock care, and have a poor quality of life.

Her parents fought the hospital to keep her alive, and won.
Eventually she was able to come out of hospital, but in the previous couple of months her parents had split up, and neither felt they could cope with the overwhelming and intensive demands of caring for a profoundly ill child.
Both parents relinquished responsibility, and Charlotte spent her first Xmas out of hospital with foster parents.

It was not a criticism to say that Charlie's parents aren't providing Charlie's care, just that so many people are actively involved in the multiple qualified roles of caring for him, that I fear they don't grasp the magnitude of the situation. And exactly what their life would entail when this hysteria has all calmed.

Because as vocal as Charlie's Army are being now, I don't see any of them stepping up and having medical training to give Charlie's parents a break, when the round the clock care of a profoundly disabled baby gets too much.
They (CA) aren't interested in what happens after their little bout of armchair activism.
They just want praise for backing a cause.

It speaks volumes, that out of the tens of thousands of CA messages baying for the blood of GOSH, and saying they'd do anything to help Charlie's fight, only 7 people turned up at the "Protest March" to wave a poster.

GOSH have behaved with huge dignity in this case, the staff must feel so sad and conflicted that the parents took them to court to challenge them.

The ITU beds are in desperately short supply and other babies and children will be affected by this, they still have not rushed the family and have given him the best of care.

I don't know how this got so out of control and I feel very uncomfortable seeing photos of Charlie with various props recently.

I am so sorry for his parents and I hope that they find peace and comfort that they did everything they could for him.

I think the merchandise is more for raising awareness of the case rather than for profits. Might be wrong

Charlie's parents have raised 800,000 more than they originally needed. That is fact. They hoped to raise 1.2m for the treatment, and have raised close to 2 million.

I would find the 'raising awareness' argument more likely, if the page said 'all proceeds go directly to TheMitochondrial Depletion Charity X to fund research', and not a section at the bottom of the merchandise page with their own bank account details.

I agree with kmc1111

Why the need to keep pushing for donations? As for selling mobile phone cases with Charlie's face on it- extremeley distasteful and cheap.