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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Charlie Gard case

999 replies

LovelyBath77 · 06/07/2017 09:41

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.

OP posts:
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mydogisthebest · 07/07/2017 17:10

I, probably stupidly, thought because they had the Court Order GOSH could just turn the life support off. Surely if they still need the parents' ok there is a chance they are never going to get that?

I can see why posters are calling the parents selfish. I hate myself for thinking it but I do. I still have sympathy for them, I still can't begin to imagine the hell they are in but Charlie is also in a hell of sorts. Of course they love him but surely sometimes the greatest act of love is foregoing your wishes and putting the person you love first even if that causes you great pain?

annandale · 07/07/2017 17:15

I would imagine one of the meetings they need to have is thrashing out the detail of how the end will be managed.

unweavedrainbow · 07/07/2017 17:19

I hope you don't mind me, I've been lurking on this Charlie Gard thread and others. I have a background in bioethics.
In terms of the letter, as far as I can gather, the type of mitochondrial depletion syndrome that Charlie has causes him to have a genetic mutation that means that he can't easily synthesise a chemical that the body uses to replace mitochondria as they die. This means that he doesn't have enough mitochondria to power his body. The treatment's aim was to give him this chemical so that he could make more mitochondria-and therefore get, at least a bit, better. The thing with the treatment is that there were some issues that hadn't been properly explored, such as whether or not the treatment could cross the blood-brain barrier. Thus the treatment would be experimental. These researchers are arguing that they have data that shows that the treatment molecules can in fact cross the BBB. They argue that this means that Charlie should be treated. It's not unethical, per se, if it means that he could recover some quality of life. Experimental treatment does regularly take place-especially if the patient/subject has very little left to lose. The key consideration though is that there does have to be a realistic possibility of increasing quality of life. With Charlie there really isn't and so arguably it would be unethical.
The letter simply doesn't take into account how sick Charlie really is-and I suspect that they're not actually aware of how sick he is. Even if the treatment works it can't repair the damage already done. Therefore it shouldn't really make much difference to GOSH's case.
I hope you don't mind me butting in.

Stopnamechanging · 07/07/2017 17:23

unweavedrainbow you are not butting in at all, anyone is welcome and your post was very useful to me, it clearly explained lots of things in an easy to understand way.

Thank you.

Alittlepotofrosie · 07/07/2017 17:25

"Imagine how many lives could be changed for the better with the money, time, effort and expertise invested in this case"

Again this is a pretty poor comment. At what point along the court system should his parents have stopped fighting for him so as to not "waste money" that other people could have used? Now the judgement has been handed down, he should be allowed to go, but how can following all the legal options when a child is at stake ever be a waste of money?

GinSoakedTwitchyPony · 07/07/2017 17:25

Thank you unweaved, your post was very helpful.

Retiredandgrateful · 07/07/2017 17:27

I'm not a major contributor to the thread either, unweaved but the information is helpful.

MissEliza · 07/07/2017 17:28

Unweaved thank you for sharing that.

DarthMaiden · 07/07/2017 17:29

@unweavedrainbow

Great post. Very articulate and informative.

Stopnamechanging · 07/07/2017 17:34

It's going back to the High Court

Doubledottvremote · 07/07/2017 17:35

I see they are now going back to court. If the answer is yes to thos treatment then I hope they get on with it quickly. If it's no...will they accept that then? Or will it then go to Eurpoean human rights court again?

DarthMaiden · 07/07/2017 17:37

@Alittlepotofrosie

I agree with you and absolutely defend his parents right to fight their case through the courts.

It's their refusal to accept those verdicts and use social media using negative campaign tactics against GOSH (and anyone with an opposing view) whilst providing inaccurate and/incomplete information about the status of his condition and the impact and treatment would have.

BTW Sky news is just reporting that GOSH have applied for a new court hearing.

This could be to justify withdrawing life support without parental consent or to allow him to go to the US - or indeed something else.

Stopnamechanging · 07/07/2017 17:37

www.facebook.com/GreatOrmondSt/posts/10154602388281921

CaveMum · 07/07/2017 17:41

What I'm reading suggests that they're going back to Court to overturn the ruling on switching off his life support so that the new treatment can be tried.

User843022 · 07/07/2017 17:41

'Great Ormond Street applies for a new court hearing on the Charlie Gard case "in light of claims relating to potential treatment".

It really is no wonder the parents have no faith in the system.

53rdWay · 07/07/2017 17:42

"Great Ormond Street Hospital is therefore giving the High Court the opportunity to objectively assess the claims of fresh evidence.

It will be for the High Court to make its judgment on the facts."

DorotheaBeale · 07/07/2017 17:43

I don't see how the High Court can reach a different conclusion from their previous judgment. There isn't any significant new information, is there, and if anything Charlie's condition has deteriorated since the first hearing, based on the recent photos.

Does that mean it will drag on all the way to the European Court again? (Rhetorical question, I know no-one here knows.)

Stopnamechanging · 07/07/2017 17:43

They have been bullied in to doing this, it does not mean that they want to give the experimental treatment.

The High Court will decide.

muckypup73 · 07/07/2017 17:43

MyrtleMaracas, maybe just maybe they are thinking ok let them give the treatment see how long it lasts, that way its on the parents and not on Gosh, pretty good thinking.

CaveMum · 07/07/2017 17:44

Ok, what I've read is very different to the GOSH statement:

"Latest statement on Charlie Gard

07 July 2017

Great Ormond Street Hospital for Children has today applied to the High Court for a fresh hearing in the case of Charlie Gard in light of claims of new evidence relating to potential treatment for his condition.
We have just met with Charlie’s parents to inform them of this decision and will continue to keep them fully appraised of the situation.

Two international hospitals and their researchers have communicated to us as late as the last 24 hours that they have fresh evidence about their proposed experimental treatment.

And we believe, in common with Charlie’s parents, it is right to explore this evidence.

Great Ormond Street Hospital is bound by the ruling of the High Court which expressly forbids us from transferring Charlie for nucleoside therapy anywhere.

This ruling has been upheld by the Court of Appeal, the Supreme Court and the European Court of Human Rights.

It has also been supported unequivocally by some of the world’s most distinguished clinicians and scientists.

The ruling also states that it is in Charlie’s best interests for artificial ventilation to be withdrawn, and for his clinicians to provide him with palliative care only.

The ruling of Mr Justice Francis states: “It is lawful, and in Charlie’s best interests not to undergo nucleoside therapy, provided always that the measures and treatments adopted are the most compatible with maintaining Charlie’s dignity.”

Great Ormond Street Hospital is therefore giving the High Court the opportunity to objectively assess the claims of fresh evidence.

It will be for the High Court to make its judgment on the facts.

Charlie’s condition is exceptionally rare, with catastrophic and irreversible brain damage.

Our doctors have explored every medical treatment, including experimental nucleoside therapies. Independent medical experts agreed with our clinical team that this treatment would be unjustified.

Not only that, but they said it would be futile and would prolong Charlie’s suffering. This is not an issue about money or resources, but absolutely about what is right for Charlie.

Our view has not changed. We believe it is right to seek the High Court’s view in light of the claimed new evidence.

Our priority has always been, and will always be, the best interests of Charlie Gard.

But our care and compassion also goes to the loving families of each and every one of the children we look after. We strive to ensure we give them limitless support at these most difficult of times.

We will always, under all circumstances, respect the confidentiality of our patients and their families.

At Great Ormond Street Hospital, we endeavour to provide the best possible medical care for every single child we treat.

It is why we are recognised as one of the world’s leading children’s hospitals, employing the most skilled and caring doctors and nurses who are absolutely dedicated to their patients.

We are proud of our colleagues, and proud of the work that they do.

We are also immensely proud of the public support we have earned over the generations. We respect it greatly and know how precious it is.

The very last thing we want is for a patient to suffer, and our devoted medical teams do their very best day in, day out, for the children under their care.

We respectfully acknowledge the offers of help from the White House, the Vatican and our colleagues in Italy, the United States and beyond.

We would like to reassure everyone that Great Ormond Hospital will continue to care for Charlie and his family with the utmost respect and dignity through this very difficult time."

FlyingElbows · 07/07/2017 17:45

I read it as gosh acknowledge the parent's claim of new help and now refer the matter back to the high court for final judgement. Their position remains the same.

User843022 · 07/07/2017 17:45

'maybe just maybe they are thinking ok let them give the treatment see how long it lasts, '
Yes you're probably right.

LetsGoFlyAKiteee · 07/07/2017 17:46

I'm guessing they've been backed into a corner and feel they have do this? Can't see it being seen as a good thing by them. Hopefully if it does go against then people accept it rather then carry on this whole saga

Poor boy

Redglitter · 07/07/2017 17:46

And then when this new drug doesn't work and GOSH are proved to be right then what happens.

Let's face it, realistically a couple of months down the line they'll be in the same position.

Heaven knows what the barmy army will do with their time now

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