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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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Ellie56 · 07/07/2017 12:59

She also said she had done lots of research on his condition but that doesn't mean she knows as much as the doctors

It's all very well researching information. You have to be able to understand it as well. I'm not sure she is thinking rationally enough to be able to understand the complexities of Charlie's condition.

Goldenhandshake · 07/07/2017 12:59

StiffyByng thank you for sharing, your post is heartbreaking and there are just no words Flowers

Ellie56 · 07/07/2017 13:02

For those who are medically trained. Is it possible that Charlie could die of natural causes before Drs switch of his life support?

I've wondered this too. If it is possible, please let it happen soon and put an end to that little boy's suffering and the disgraceful media circus.

MyPatronusIsAUnicorn · 07/07/2017 13:04

This circus really really needs to end now. I'm confused as to why it's been a week later with nothing being done and CA are just whipping up into an even bigger frenzy. The longer this drags on, the worse they are getting. The parents cannot be relied upon to deal with this rationally so GOSH should carry on with the court's ruling.

MyPatronusIsAUnicorn · 07/07/2017 13:05

"For those who are medically trained. Is it possible that Charlie could die of natural causes before Drs switch of his life support?"

This would be preferable at this stage. Then there will be shouts of "the doctors didn't act quickly enough, they could have prevented this" bullshit from CA.

Maudlinmaud · 07/07/2017 13:08

I presume we will know soon enough. I won't watch any videos the parents release again.

notgettingyounger · 07/07/2017 13:10

hackmum I agree. The Gards have had a team of committed, dedicated doctors helping and millions of pounds spent on trying to help their baby (money that could have saved thousands of babies in other parts of the world) and now they are drumming up hatred. Of course the doctors are not in one big conspiracy. That's just daft. Paediatricians have trained for years and work long hours and in some heartbreaking situations because, you know what, they are good people and want to help sick children. Difficult as it must be to accept the terminal illness of a child (and I can't begin to imagine the pain) it is not okay to take out your distress on dedicated professionals doing their utmost for your son.

Notknownatthisaddress · 07/07/2017 13:15

Going back six months when the courts ruled Charlie had to die and the parents couldn't take him to the States, I felt sorry for the parents. But I have lost patience with them now.

I am sick to death of seeing them, and sick of hearing about the case. The poor lad needs to be left in peace, and left to die with dignity.

It's all gone too far now. And the way these hysterical harpies on fakebook have got involved, and the Pope and Donald Trump etc is utter madness.

I switch the tv channel over now when I see the parents and their 'sad' faces looking into the camera, whilst they're standing over Charlie. I also wonder, if Charlie does die (ie, they turn the life support machine off,) what will happen to all the money the parents have been given. Nearly 2 million now is it? I sincerely hope they will give it to Great Ormond Street Hospital.

IMO, if someone cannot survive without life support, they are already dead. Even if Charlie DOES survive, he will need care for life. What kind of life is that for the poor boy? Sad

CaveMum · 07/07/2017 13:16

I've been out since 10am, has an announcement been made? I looked on BBC but couldn't see one.

Laiste · 07/07/2017 13:21

Perhaps him passing by himself is a real possibility and then at least GOSH staff may protected from the 'murder' shouters.

They'll shout neglect instead. Or some other twisted hysterical shite :(

brexitstolemyfuture · 07/07/2017 13:23

I donated, I wish I could take it back now.

I was one of the ill informed :(

I wish the pope and trump wouldn't try to use this for gain.

Maudlinmaud · 07/07/2017 13:23

No Cavemum no news.

DorotheaBeale · 07/07/2017 13:26

I felt sorry for the parents. But I have lost patience with them now.

Though the public campaign does seem to be coming mostly from the mother. The father, Chris, seems to have kept a much lower profile, other than the photos of the two of them with Charlie.

Katz · 07/07/2017 13:29

Even if the content of the paper posted by Dorothea is very scientific the conclusion is pretty clear

Conclusion
The past 5 years have seen several new approaches developing through our understanding of the molecular pathogenesis of mitochondrial diseases. For mtDNA disorders, the early clinical studies attempting to harness gene-shifting some 15 years ago have not really progressed beyond early open labelled studies—probably because the likely clinical impact is limited using current approaches. Although intriguing, other molecular approaches directed against mtDNA disease are very much at the preclinical stage, and will require substantial development to improve efficacy and ensure there is no substantial risk of toxicity before human trials. From a clinical perspective, nuclear-genetic enzyme defects show the greatest promise. Stem cell therapy is already being used in specific contexts, and its efficacy and safety being evaluated, and gene therapy trials in mouse models show clear benefits. Unfortunately, each one of these rare genetic diseases may require their own proprietary approach, and the impact needs to be evaluated long-term. Small molecules are attractive because they have the potential to provide a more generic solution applicable across the mitochondrial disease spectrum, and a greater understanding of cell signalling pathways opens up several unexpected disease targets. For some of these drugs, clinical evaluation is imminent, particularly for those being repurposed or repositioned drugs such as bezafibrate. It is critical at this stage that laboratory and clinical scientists work closely with patient organizations to ensure that the ultimate aims of therapy will actually tackle issues that are important to patients. Given limited resources, this will ensure that new treatments improve quality of life—a prerequisite if these treatments are going to be adopted by healthcare systems worldwide.

MissHavishamsleftdaffodil · 07/07/2017 13:35

Is it possible that Charlie could die of natural causes before Drs switch of his life support?

That would be the easy way out for all the adults in this situation certainly. It certainly wouldn't be for Charlie.

The issue is allowing a young child to suffer and receive constant painful, invasive care that achieves nothing for him except to forcibly stretch the process of dying out as long as possible - but makes a whole lot of adults feel better they haven't had to make a tough decision. How can that be considered ethical?

LogicalPsycho · 07/07/2017 13:37

DeleteOrDecay

This case is a prime example of why the saying 'parents know best' is dangerous

There's a reason why Nurses can't treat members of their own family, and
why a Police Officer would never be allowed (or trusted) to investigate someone they are related to.
And the Ethics Code says it wrong for a surgeon to operate on a family member.

Because as soon as you have any emotional involvement/attachment to the person, you lose your both your objectivity and impartiality.
Your ability to make a rational decision is clouded by personal involvement.

DarthMaiden · 07/07/2017 13:48

A large part of the problem here is that whilst his parents are able to speak freely to the media regarding their perception of his condition and current heath, GOSH (quite rightly) are bound by patient confidentiality to say nothing.

This means that apart from information in the public domain (as pertained to the court cases) they are not able to explain, refute or clarify any statements being made my CA or his family.

For example - the fact that he was not being allowed to go home. This was interpreted by some as GOSH holding him hostage. The doctors now saying there is a 10% chance - who are they? What is their specialism? Why is this incorrect? Again GOSH can't refute these claims.

The whole media circus is inherently biased as only one side of the story is being told and what is more, told by people without the specific medical knowledge and who are understandably emotionally compromised by the situation they are facing as parents.

To people saying "we'll send him to the US" GOSH can't allow it for 2 reasons. Firstly they would have to get a court order to do so (which is theoretically possible), however it would ask what new evidence (over that presented in all other proceedings) was available to show why this was in Charlie's best interests now - and there isn't any. The situation has not changed - in fact it is more likely as time continues that his condition has at best stayed the same or at worst declined.

Secondly even if this legal obstacle could be addressed it would set a dangerous and unethical precedent to allow the parents wishes to over-ride the best interests of the child.

It's a terrible situation and I feel very sorry for his family. However as much as I sympathise for their situation, I cannot agree with their ongoing actions and willingness to play this out publicly and especially the drip feeding of "medical" evidence that puts GOSH in a bad light.

MissEliza · 07/07/2017 13:49

I haven't read the whole thread - it's massive! I have no real opinion on the case as a) I'm not a doctor and b)he's not my child so I don't have a right to one. However it does make me angry to see what a circus it's become. People demanding the Prime Minister get involved?! WTAF? The prime minister can't contradict the judiciary. Do people not get how our system works?
Also I watched the mum on GMB this morning and while I feel heart sorry for her, I wasn't convinced by what she was saying. I was shocked when she said he could have a normal life. Also she complained they were left out of meetings. I think that it is perfectly normal for doctors to have meetings without relatives present to discuss erm medical stuff. However what really took me aback was when she claimed to know everything about this condition as she'd done lots of research. That's just ridiculous. Again I feel desperately sad for the parents but I'm not sure I like the way they're handling this.

Puzzledandpissedoff · 07/07/2017 13:51

Is it possible that Charlie could die of natural causes before Drs switch of his life support?

I don't pretend any medical knowledge, but I'm pretty sure one of the court judgements mentioned that Charlie's in the terminal phase of the disease

If this is correct, it obviously follows that he could well pass "on his own" before life support is removed - though probably that would depend on how long this is dragged out for

hulahooper9876 · 07/07/2017 14:00

This reply has been deleted

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LogicalPsycho · 07/07/2017 14:00

Sadly, at this point in time, I think when Charlie's Life Support is switched off, I expect his parents to use the £2m that's been raised to hire top lawyers to sue GOSH.

Unless their current pro-Bono lawyers have already offered to do stay on representing the family already?

LogicalPsycho · 07/07/2017 14:03

To try and Sue them, I mean.
Presumably they wouldn't succeed, as GOSH have done nothing legally or morally wrong.

goodbyestranger · 07/07/2017 14:05

They wouldn't have a chance of winning a case against GOSH - none at all.

goodbyestranger · 07/07/2017 14:06

You only win a case if you prove the other side have done something legally wrong - morals don't always co-incide, though they mostly do.

IfYouGoDownToTheWoodsToday · 07/07/2017 14:06

I too noticed poor Charlie's body has become so bloatedSad.

Whatever happens to him, I hope he isn't in pain. No baby should be left in painSad.