Charlie Gard 12

[muckypup73]

This is a thread following the legal and ethical questions raised by the recent court case involving Charlie Gard.

Please could we refrain from insulting or otherwise "bashing" his parents. It isn't in the spirit of Mumsnet and will get the threads removed.

Please could we also remember that at the heart of this case is a terminally ill baby and his heartbroken parents. There are those participating in and watching this thread for whom these issues are painful. Please let's try and be mindful of them when we post. This isn't a place for name calling or trivialising the very real pain they feel. Many parents of severely disabled children are on here.

Lastly, here are some hopefully useful reference points of facts surrounding the case.

13 July GOSH position statement on latest hearing (includes update on Charlie's condition):
www.gosh.nhs.uk/file/23611/download?token=aTPZchww

7 July GOSH statement on Charlie:
www.gosh.nhs.uk/news/latest-press-releases/latest-statement-charlie-gard

June 2017 Supreme Court decision:

May 2017 Court of Appeal Decision:
www.bailii.org/ew/cases/EWCA/Civ/2017/410.html

April 2017 High Court Decision:
www.bailii.org/ew/cases/EWHC/Fam/2017/972.html

GOSH FAQ page on Charlie:
www.gosh.nhs.uk/frequently-asked-questions-about-charlie-gard-court-case

Bum fight has made my day thanks. Much needed a giggle

I agree NellieBuff. I too think the fluid retention in Charlie is from failing heart & lung. Not minimal dose oral Morphine he's on. Looks like whole of CA think they are medical professionals now!
Would CA rather Charlie suffers from pain & discomfort of mechanical ventilation than have a bit of morphine ? The poor child cannot even indicate if he's in pain or not.

Maryz, I agree that CA are fascinating from a social-study point of view.

I agree there are many different types of people there's posting from all kind of different agendas.

@reallynotanotherone what an awful end and theyre still denial with no funeral that poor baby

i can see this going the same way as c an c are convinced gosh are to blame

I've done some work with people on a minimal dose of morphine (would have been oramorph) and I can't remember any of them being bloated. I certainly wasn't when i was on it many years ago. However, these were all cancer patients (as was I) so maybe there's a difference.

Unless he is on a steroid then in my (non-clinical) view it looks like organ failure to me.

Could eyes open during a seizure?

There was a link to a very old DM story about some scandal at GOSH on the FB site yesterday - think the story was from 2011, but someone was acting like it was new. It is a bit worrying when people can't even check the date on a newspaper source.

Mirandawest. Indeed. That link refers to a drug which is a combination of morphine and naltrexone. If people are going to preset information as fact at least google the right bloody drug.

I am incandescent at our socialised health care being accused of being baby killers and have also wondered what would have happened to Charlie if he had been born in the US to parents on modest incomes.
A friend of mine gave birth to twins at 26 weeks. They spent 12 weeks in hospital which must have cost a fair whack.
They have also had loads of follow up to check that there are no long term effects of their prematurity.
Their parents are eternally grateful to the NHS.

Unsure if this has been posted, but apparently C&C have lost the latest battle re. the length of the EEG- linky. They wanted it limited to 30 mins and Judge Francis has said it can be whatever the treating clinicians consider is appropriate. I think 4hrs was mentioned somewhere?

So the UK supreme court had decided this case, the ECHR had agreed, Dr Hirano had agreed and the parents had even accepted the judgement.

Then the Pope sticks his ore in and the matter comes to Trumps attention who sees an opportunity to demonise socialised medicine and gain support to end Obamacare (which he hasn't managed to do so far).

Trumps fundamentalist pro-lifers fly into London, stir up hatred and lies and a poor baby becomes a political/religious martyr with who knows how many seeing it as a band wagon to make money, raise a public profile, make political capital, side step years of drug regulations, or simply just to spread hatred.

Why is the Popes doctor allowed to give a life or death opinion when their bias to always keeping the child alive no matter what. not even mentioning the churches record of child abuse
Why is an American doctor allowed to give a life or death opinion when their bias towards the parents rights and making money, not whats best for the child.

Can we not ban and deport these pro-lifers that come to this country to preach hatred. How can they preach parental rights to treat a baby however they want and also preach an unborn baby should have independent rights above a parents? Its contradictory.

I don't like the precedents that are being set. Will parents as long as they have googled the condition now be able to demand to be present at all clinical meetings. Will the NHS now have to consider any doctor world wide that a parent trawling the internet claims offers a cure a chance of any sort of improvement. Cant even imagine what effect crowdfunding your health care is going to do to our society.

Am I imagining all this?

craic therre wa apprntly anemeergency hearing sunday with the judge about it

No, you're bang on Fresh

thats what worris me fresh the precedents being set

ignore all th courts you wont have to do as they say

It does feel that way.

**Can we not ban and deport these pro-lifers that come to this country to preach hatred. How can they preach parental rights to treat a baby however they want and also preach an unborn baby should have independent rights above a parents? Its contradictory

Exactly @Fresh
Whatever suits their agenda! I wish one of our UK newspaper reporter is bold enough to write that. They seem to be just competing with each other reporting whatever C&C say or share on SM

As a NICU nurse I've tried my very best to stay away from these threads and keep my thoughts to myself but I just cannot bite my tongue any longer at the most recent comments on the CA page on the post that includes the picture where his eyes are open. To read that it's GOSH's fault that he looks so oedematous because they are purposely "pumping him full" of drugs in order to make him look worse is an absolutely barbaric claim and I'm getting to the end of my tether with these people.

As somebody who has cared for many babies who are terminally ill and their families, I can absolutely guarantee that everybody caring for Charlie will indeed have some kind of emotional bond with him and will more than likely feel the emotional strain of the whole situation. There have been many times where I have cried with parents, cried with colleagues, cried in the car on the way home from work and cried in bed at night when the emotions of your job and the attachment which you've built with these tiny little people and their families makes your heart ache.

The people they are accusing of these hideous claims are real people with real emotional investment into this little boy and I cannot stand to see them attacked any more.

Sorry for the rant . I had to get this off my chest before I explode.

I think GOSH should bill the parents for ITU care for the days after they lost the ECHR appeal & also legal costs for the second round of this court proceedings (as they did it because parents thereatned JR apparently)

yanbu magic (or Maryz for the rant!)

Magicdoll

I can imagine how it makes you feel. I'm impressed you've managed to sit on your hands.

Am I being cynical in thinking it would be possible for 'someone' to just pull the babies eyelids open for the short time it takes for a picture?

Do parents have to take out insurance for their children prior to their birth, just in case? The mother's health insurance covers the child through the birth/maternity hospital stay. You call your insurance when the baby is born and they add them to the policy.

What if Charlie didn't have insurance? If Charlie's parents didn't have insurance to add Charlie to, then Charlie would be put on Medicaid (if the parents qualified) or if they had too much money to qualify it would be expected that the parents would pay out of pocket (regardless of ability to pay)

And if he did, and was being treated at massive cost to some insurance company, you could surely never trust that the decision to withdraw life-prolonging therapy was being made on the basis of the patient's best interest, as opposed to the insurance company's financial interest. The insurance company cannot make the decision to stop treatment. They can only decide not to pay for it. And most medical providers here are just as caring and dedicated as they are in the UK. They would try to work things out with the family including foundations, charities, and payment plans. There are also wonderful institutions for children who take children regardless of the parent's ability to pay.

The thing to remember is that NO medical provider can choose to disconnect life support over the objection of the family for someone in a PVS, like Charlie. Nor will a US court order it. That only happens when someone is ruled brain dead. What this means is that the bills keep mounting and either insurance, Medicaid, or the family will pay. The Gards would be no different if they were allowed to bring Charlie here for treatment.

@magicdoll

I really don't believe the people writing such vile comments are "thinking" at all.

There's very much a sub group of CA that - dare I say it, umm yes - seem to delight in being as controversial, hostile and odious as possible.

Their remarks don't help Charlie, his parents or wider family.

The vast majority of people (and it's telling that even the Daily Fail comments fall into this camp) whilst feeling compassion for the parents, don't believe their actions are correct. They equally find the comments being made about HCP's and GOSH utterly appalling.

There was a link further down to a great article and the section that really resonated with me and I've copied below.

--

This is the fundamental, brutal truth at the heart of this case. And while Charlie’s parents believe themselves sincere in their claims—“We’re not doing this for us. He’s our son. We want what’s best for him. If he is still fighting, we are still fighting”—the fact remains that they’re not actually fighting in the child’s interest. The pain of losing their son is being prioritized over Charlie’s own sustained agony. Further, Charlie isn’t “fighting”: He’s dying. He’s not engaged in this battle. For most observers, these are difficult notions to consider; for those intimately involved, they’re impossible to admit to.

"...and let this child live"
But he is not fighting to stay alive, he is more fighting to die, and the life support is there to stop it happening. That poor baby is alive, but he's not living.

I really hope his parents can come to terms soon with his terminal condition and finally grant him some mercy.