Charlie Gard (16) Future implications arising from case

[Puzzledandpissedoff]

If anyone wants to post, perhaps we could consider what implications today's case might have for others in future ... ?

but why is chris claiming dr hirano will still treat him and in the nxt breath says it too late

Thanks for the new thread.

I think there is a danger of Dr Hirano being painted as the villain of the peace by some, both here and in MSM.

I don't think that's fair - AcrossthePond55 made a very good post toward the end of the last thread about this, I hope she'll repost it.

piece not peace!

The merchandising just seemed all wrong to me, almost a competition as to who had the most bracelets / key rings and whatever else. sad

I am some on CA will be worked now about the bracelets & key rings they have paid for which was only going to be sent next week.
Luckily CA page looks more moderated now.

I should have said 'I am sure some on CA will be worried now

I don't think this will be the end of it, tbh. Even if C&C want to grieve quietly and get it over with, they have too many people close to them who won't let that happen.

The Mail does not appear to have decided what position to take on the story so, for once, carries a pretty balanced report. It includes the full statemens from both Connie and Chris

www.dailymail.co.uk/news/article-4723092/Charlie-Gard-s-fate-decided-TODAY.html

GabsAlot
but why is chris claiming dr hirano will still treat him and in the nxt breath says it too late

I guess it is hard when u have fought so hard for it & now it's dawned on you how poorly your child is & have finally decided to act in his breast interest - They are saying they made that decision - so their 'parental rights don't get stripped' again (as that's what they said repeatedly when they lost earlier challenges.
I also think they are probably thinking about dying GOSH or atleast the medical team- they thanked only the nursing staff in their statement.

@Hudler and @Mommytomylittlestars your posts have been really astute about Hirano and I think probably pretty near what happened.

Within a few days this will go off the radar.

I hope so. And I hope the Gard family will be able to say goodbye in peace.

Whatever might happen subsequently will take a long long time.

May the child rest in peace.

Bedtime for me. Nice to see mnhq have deleted my dopey post now, I was starting to panic a little!!

Agree that the Mail's article is relatively balanced, thanks for the link Bore.

From today's judgement :

By application dated 7 July 2017, Great Ormond Street Hospital for children NHS foundation trust (“Gosh”) applies for the following:
“the hospital asks the court to affirm the declarations made 11/04/17 if necessary after hearing further evidence. In view of the unique situation that has developed, the hospital also asked the court to make orders in the same terms. The hospital would not normally seek orders and does so for the following reasons among others: in his judgement, Francis J said that it was in Charlie’s best interests to be allowed to slip away peacefully. Decisions expressed as orders would better enable hospital to achieve that aim than would further declarations; the declarations have been interpreted by the White House, and thereafter by the parents through their solicitors, as permitting Charlie’s transfer to another hospital for NBT treatment. Aside from the fact that the declarations say that treatment is not in Charlie’s best interests. The hospital does not understand this line of reasoning but has no expectation that it would be possible to reach agreement about the legal effect of the declarations. Therefore orders are sought to remove any ambiguity; orders are enforceable. Despite all of the hospitals best endeavours, this appears as potentially necessary. Not for the first time the parents through their solicitors raised the prospect of criminal proceedings against the hospital and its staff. The Hospital understands that no court order best interests proceedings can afford it or its staff from prosecution.”

I found this quite shocking. It seems to be saying that the parents and others interpreted the April court judgement as allowing transfer to the USA, and for this reason GOSH asked the judge this time to make an order rather than a declaration. He did not.

In addition, the parents have more than once raised the possibility of criminal proceedings against GOSH or their staff.

Have these issues now fallen away on trust following the parents withdrawing?

I do hope so, and hope he has as peaceful a death as possible, in their arms and a place they are comfortable with.

The parents through their solicitor threatened criminal proceedings?

I can't imagine how fraught things are in PICU at the moment.

I do not know why people are saying "I hope he has a peaceful passing"

He will. The poor mite, his passing will be much more peaceful than what he has had to endure up to now.

I will say no more but two people made sure he lived on, possibly in pain from their deluded stance. But they thought they were medical experts.

This is a much nicer thread than previous ones for various reasons, it is less critical and judgemental of others opinions.

When it comes to future implications, my concern is around other parents who are facing making end of life care decisions for their children and how this case has impacted on them. I am a member of a parent support group for children with disabilities and this has come up a few times. One poor mum is terrified that when it becomes impossible to treat her child any further, she will end up fighting with the doctors and it will be all over the press. In these discussions, many others weigh in about how doctors always get it wrong and their clinical team are playing god, telling them their child will never do xyz and yet here they are ten years later.

In my experience it often comes down to poor communication rather than godlike arrogance. We were told there might be many things our daughter might not be able to do, and she has done them all. Were the doctors wrong in writing her off? No, because they didn't write her off. They suggested to us what the worst case outcome could be. We listened carefully and they also said that it was difficult to predict as every case was different. I think, sometimes, people hear the worst case scenario and stop listening. And sometimes medical teams forget that the medical jargon and worst case scenarios aren't appropriate for all families.

I would like there to be a kind of "medical advocate". Someone who isn't a doctor but understands the medicine, someone who I can work with the parents to bridge that gap. Who isn't part of the hospital staff, but could be provided by the local authority, someone independent who can guide parents through it.

I would also love it if parents who had been through this with GOSH would come forward to share their story about how this hospital in particular is not failing patients and parents. These decisions are made every day and in the vast majority of cases, the whole team around the child come to agree on the next steps. Facing this decision is the worst thing in the world, the last thing parents need is to be afraid they will be railroaded by the doctors or forced by the court to relinquish their parental rights.

Just in case, god forbid, any of you need it and don't know it in future:

The phrase you need if you don't want your loved ones kept alive unnecessarily is "no heroic measures". When my father was on life support, a family friend who's a paediatric consultant told us this was the kind of code phrase that allows doctors not to resuscitate etc when hope of a full recovery is gone.

Sympathies to everyone, the Gards, and anyone else who very sadly had to make the ultimate decision.

This thread hopefully will die down soon.

There is nothing left to discuss anymore.

May all those children who have died and will die over the next few days rest in peace.

Their parents are so dignified in their silence. And of course their terrible grief, which is not on the front page anywhere, but that is what they want. To grieve with dignity for their child.

Originalfoogirl, if you can bear to look at the GOSH FB page, you will see literally hundreds of people saying that their children had treatment there and that it was incredibly good. In among the CA idiocy on there, it's very heartwarming.

What Monty said is right. I've noticed on the GOSH FB page there are lots of comments in support of GOSH, from both parents and from adults who were treated there as children. It's good to read them.

I always said Hirano was is it to further his own research and line his pockets.

He was invited by GOSH in January to examine him and didnt bother taking it up.

He signed a document regarding new evidence and then I take this from the document:

When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed. It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s
decision made on 11 April.

Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.

I always said he wanted to test a theory and get paid alot of money. A human guinea pig and over £1 million would allow him to take a short cut with with research right through living tissue.

That feckless time wasting Professor has been the reason, our NHS, GOSH, Drs and nurses and legal staff have had their names dragged through the mud when the saviour professor far from being denied access to treating Charlie hadnt bothered doing anything since January.

Dr. Hinaro was engaged by the Gards.

Mother believed him and so did Dad. No medical evidence for this.

Then the Social Media scrum began.

An GOSH were there still looking after the child knowing it was all rubbish.

But the parents were given EVERY opportunity.

And still no. Even after today when they made their decision based on medical evidence, they STILL had to denigrate the carers of their son.

I am unsettled by this, and angry TBH.

Sorry, but it wasn't Prof Hirano's job to do that. It was Charlie's parents, or their legal team's, to chase him up. Once the court judgments were in from everyone up to the ECHR, GOSH's position was clear. Hirano was at best a hired gun - if he was a crucial part of the Gard family's side of the story, it was up to them to get him over here and assessing Charlie. And given that he'd said in April that there was no point in treatment, I can see why they didn't. What's not clear to me is why he went as far as he did in saying that there was new evidence (when there clearly wasn't) I do wonder what the correspondence between the Gard family, their advisors, and Dr H would show. I suspect he had no idea he was being set up as Charlie's Saviour.