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

Directions hearings are usually purely procedural, to talk about things like whether anyone will be filing more evidence, whether witnesses will be heard, likely length of the hearing, etc.

I think GOSH should just release Charlie.

After a year all this will be old news, but to the parents this will blacken their hearts forever.

The treatment has a high level of not working, if that does happen at least the parents will can say they did everything possible for thier son.

The money has been raised, all these court cases has got to have cost the public millions as well as the cost of Charlie's ongoing life support.

There are medivac companies who have their own planes, equipment and employ staff. They specialise in moving people who are too sick to travel on scheduled airlines. This is usually repatriation.
I don't know whether they would be experienced enough to transport such a sick child or even if they would even be prepared to get involved in such a high profile case

EveOnline there are far wider implications of this case than just Charlie and his parents.

The court Judgement for the twin boys is a very hard read, but what a wonderful compassionate Judge.

Much, much earlier a poster was asking about a directions meeting. This is where the parties meet so the Judge can talk to them about procedures and protocol in court as well as what he will focus on in the hearing. He will refocus all concerned!

Thank you, bubbles ... it was me who asked and I very much appreciate your explanation

I think GOSH should just release Charlie
What? onto the pavement?
What exactly do you mean by "release" him, I genuinely don't understand. "release" him how? to who? where? and how again?

The treatment has a high level of not working, if that does happen at least the parents will can say they did everything possible for thier son

Everything possible, except to stop his pain and suffering?

The treatment has a high level of not working, if that does happen at least the parents will can say they did everything possible for thier son
and then what. If it doesn't work but he's in a strict christian hospital in the states who won't consider turning off the ventilator?
If he's stable but the sponsors have lost interest and needs long term care and there's no money left for repatriation?

I think GOSH should just release Charlie

I don't believe GOSH would ever do anything that they believed was not in Charlie's best interests.
However this is now out of their hands. The judge is the only person who can decide what happens to Charlie and his decision will also be made only on Charlie's best interests.
I do feel sympathy for C&C but am also aware that in this media circus the interests of Charlie don't always seem to be at the forefront.
The longer it continues C&C are being more and more backed into a corner by those with their own agendas.
Like others I hope they will eventually be able to find acceptance and peace.

This horrendous case ..I have heard people state that where GOSH 'went wrong' was to allow the ''extra weekend'' to say 'goodbye'..the couple had made a video [expect you have seen it, no need to go into details]
They had the weekend to 'say goodbye and to 'make memories', and there was a media break...
But instead of being peaceful,they used the valuable time to drum up more support from the Americans..it seemed odd that Hirano suddenly came up with 'new' findings that might make a difference to the case.
It is like this 'fight' has become addictive, a distraction, a coping mechanism, If CY is frantically buzzing around social media/campaigning, it holds the hollow anguish at bay..
Incredibly sad, most people face their grief alone, in private, in a little bubble of family [if they are lucky] or alone..

One thing that does seem insensitive is when members of CA post pics of their healthy children on the CA pages.

As things stand now..If the Judge rules the 'palliative care only' route, CY and CG will shriek and disrupt the place..I can imagine hideous scenes that will cause extreme distress to everyone. [Staff, other patients/parents]..
Charlie has suffered enough, surely..

The money has been raised, all these court cases has got to have cost the public millions as well as the cost of Charlie's ongoing life support.

And do you think GOSH would honestly have gone to these lengths if they didn't feel that this young boy's life and comfort was beyond reasonable limits? Doctors take an oath to their patients - 'Do no harm.' They genuinely believe that their current treatment plan is doing him harm.
It might blacken the parents hearts but the bottom line is while the hospital work with the parents it is Charlie they have the ultimate duty of care for.
Parents have responsibilities not rights. This is about Charlie's human rights. It's heartbreaking but it's the road all of us set out on if we choose to become parents. And believe me I don't say that lightly.

I agree that we in the UK are not good at dealing with death and try to avoid discussing it at all costs. There is a saying that 'the only guarantee in life is death' which is pretty much true.
I went to a funeral a few years ago of the mum of one of my patients who was Jamaican. She was in her late 50's so young in terms of life expectancy but not tragically so. It was called a 'homegoing service' and, although there was sadness, it felt very different to other funerals I've been to.
At the end of the service, the coffin was opened and people were invited to come and say goodbye. It was really noticeable that all her Jamaican relatives came up but all the white British people didn't (including me) and seemed to be cringing at the thought of it.
I have a good friend who works in a hospice and is passionate about the importance of end of life care and has talked very movingly about sitting with families while someone dies.
I used to be terrified of dying but, having witnessed 3 of my grandparents and my FIL passing away, I don't fear it anymore. They all looked so peaceful and it was literally like watching someone fall asleep. 'Slipping away' describes it so well.

The Judge sat as a Deputy High Court Judge in the Family division. He had a 4 year term from 2012. It is true his specialism as a QC was high net worth divorces, but he had hardly been a back number in the wider work Family Division until his appointment as a High Court Judge last year.

have not RTFT (been at work for a couple of days)

all the "grant US citizenship" is just bilge
I have it
I know how hard it is to get / to keep
the CA people who think its easy are deluded

Eve the problem with your view that he should be treated, is that it is based on a hypothesis that the parents wishes should be allowed to override what's in Charlie's best interests.

It would set a terrible precedent, where children are no longer treated as individuals in their own right, rather they are chattels of their parents who can determine any and all aspects of their life.

This case isn't about appeasing his parents. It's not about money or resources.

It's about the right of Charlie to be treated in a way that serves his very best interests.

Tinsel That is a scary thought, they quite genuinely could end up stuck in America, interest lost, huge eye watering medical bills mounting up for years.

The money has been raised
Do you think it's enough to cover medivac plus at least 3 months of PICU? I don't
Do you know which US hospitals are willing to accept him? it's not enough to just have a doctor, they can't treat him on the side of the road
What do you think will happen after he recieves the treatment? how will that pan out? it's one thing for politicians and doctors to want to help him have a high profile drug, it's actually a lot harder to get help with things like incontinence supplies, especially if you're stuck indefinitely in the states!

Eve the problem with your view that he should be treated, is that it is based on a hypothesis that the parents wishes should be allowed to override what's in Charlie's best interests.

Also where does it end?
If the treatment doesn't work, should they be allowed to just keep him artificially alive indefinitely incase a newer cure all drug is invented in the future?
Since they should be allowed to "try everything" and all?

Just catching up new thread!
@EveOnline-
I think that is what the whole ethical/moral debate is about- should GOSH as you say 'just release Charlie' for /or agree to provide him experimental treatment which they believe won't help him just so the 'Parents "feel" they have done everything they can for their son'
Doesn't Charlie have his own rights?
GOSH thinks it's more important to uphold what is best for Charlie- something they have concluded after a lot of thought, lot of second opinions and even an independent guardian. And it is English law, it is under GMC duties.
As parents we can be led by emotions not rational evidence based thinking, and somewhere deep down there is this parental guilt- 'have I done all I can ?'.
What we do to reduce this guilt is not necessarily in our children's best interest.
I think the sad thing for CG's parents is someone across the pond gave them a small glimmer of hope and they are still clinging onto it. The image CY released today saying "Charlie is not blind"- says it all. The child Looks very sick, has half open eyes focusing on nothing- even the direction of the gaze is different in each eye (and Charlie didn't have a squint in previous photos) and they have put a toy in front of his eyes and believe he is seeing it.
But then CA also believe light it up blue autism awareness day stock photos of world monuments was all buildings lig up blue for Charlie- Guess the photo was for their benefit- more ammunition for them to slag GOSH 😔

The cost of chartering a medivac plane would be enormous..would the pressure changes not cause adverse effect to Charlie?

Even much less ill people [taken ill overseas] are refused flights until they get medical clearance that they are fit to fly.

It does seem a huge ask to take him from the team at GOSH that will know Charlie so well [medically speaking]..A Transatlantic handover would be a big undertaking.

What is wardship?

Wardship is the name given to court proceedings by which a child is made a ward of court. This means that the High Court can be vested with supreme legal guardianship of a child to ensure their safety and protection. Day-to-day care and control remains with an individual or the local authority but the court’s consent is required for any important step in the child’s life. Additionally, the child cannot be removed from England and Wales without the permission of the court.

Does this then mean that Charlie is already a Ward of Court ?

It goes on to say

The court obtains Parental Responsibility for the child; they share this with those who already hold Parental Responsibility but no important step can be taken without the court’s consent.

We need a social worker to tell us. I know the Guardian is a social worker (not suggesting we should ask them). My sw son is involved in child protection and will ask him if I see him at the w/e.
childlawadvice.org.uk/information-pages/wardship/

No. He is not a ward of court. In court Charlie, as a separate human being who connot speak for himself, is represented by a guardian who in turn is represented by a Barrister in court. The parents are represented by another Barrister as is GOSH. All three submit views to the judge and advocate for their clients. The court has not taken any other steps to make arrangements for Charlie.

The judgement about the poor twins and their poor parents made me proud that we have the system we have. I have personal experience of the devastation of genetic disorders and actually am glad now looking back, that I could accept the medical opinion, even though every fiber of my being wanted it not to be so. I look back with sadness, but not anger.

I thibk the CA crowd are either malicious or deluded. When I was in that situation a couple of people said to me 'don't give up hope' after I had clearly said to them 'there is no hope' and it annoyed me and added to my feelings of isolation.

Cauliflower that is very sad.

I think it sums up quite well the problem with CA.