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 ... ?

Could they appeal given that they dropped the case yesterday?

I am sorry, and I hope this doesn't go against the MNHQ charter or anything, but I am slowly losing it with the parents now.

I would imagine that a transfer to an ordinary house would be impractical if not impossible. Definitely not in the child's best interest would be my comment.

If it is allowed there will be another media scrum.

That child deserves the dignity of a peaceful and private passing.

But what we may get is more appeals and so on. It just sounds so entitled and very immature to me.

Is it all about them or the child now?

PM is only legally required if you die unexpectedly

Unless we have been in that situation I dont think its fair to be too critical about the parents. They are going through a nightmare, so cut them some slack. They are going to relive these next few days for the rest of their lives, whereas we all will move on with our own families and forget about this in the coming months.

I think they have been very badly advised and have been clutching at straws. GOSH have been professional as you would expect.

Lets hope Trump doesnt mention the case in a big rally he is doing this evening.

p.s. I might be wrong, but I don't think his condition means he will die until the ventilator is switched off. The issue for me is whether he is in pain and if so then he should be allowed to pass soon - his parents don't think that so they probably want to have more time with him.

I am fairly confident that a post mortem won't be carried out.

This, sadly, will by no means be an unexpected or unexplained death.

I just keep thinking of the post a few threads back of the child allowed home to die, who ended up dying in the back of the transfer ambulance. Are they really so untrusting of Gosh that this would be preferable? :(

I was just looking at a scientific paper:
Seminars in Fetal and Neonatal Medicine
Volume 16, Issue 4, August 2011, Pages 205-215
Infantile mitochondrial encephalopathy
Graziella Uziel, Daniele Ghezzi, MassimoZeviani

I'm NOT a medic. But what became fairly obvious when you look at that paper is the enormous number of subtlly different bases for these disorders. And at the end of the article, it says, under Practice Points:

"Measurement of lactate and MRI analysis are important clues"

Throughout the article, there are various signs indicated in the MR images (lesions, issues with white matter etc). If you read the April judgement:
www.judiciary.gov.uk/wp-content/uploads/2017/05/gosh-v-yates-and-gard-20170411-1.pdf

Pointy 58 refers to lactate. Point 59 refers to "significant deterioration in brain function evidenced by the development of persistent seizures." Point 63 refers to EEG and MRI by leading expert, and says "...The most recent of these does not show any major
pathology, but does reveal some subtle increased signal in the
subcortical white matter of the occipital lobes. This would be a typical finding in patients with mitochondrial DNA depletion syndrome."
Perhaps the 'does not show any major pathology' phrase was what caused confusion. The white matter signals that Dr E was looking for in the MR images were subtle. Point 76 is also instructive.

All I'm saying here is that even a quick glance shows you that the area is horrendously complicated, with a whole variety of rare and extremely rare genetic inborn errors. That GOSH seems to have people who know what they are doing, and also consulted appropriate experts elsewhere. That in contrast to these other people quoted in the judgement, Dr I's statements were admitted to be 'theoretical'. But GOSH were going to go ahead (9th January, Point 79). Then Point 82-83. The increased seizures and 'severe epileptic encephalopathy'. Point 87 refers to Dr B and "He said that Charlie’s brain is now so damaged that there is no movement. He said that there is no evidence of a sleep/wake cycle, which, he said, is a really
strong indicator of how bad Charlie’s brain function has become."
Point 90 is the clincher from Prof. A:
" it is not possible to reverse the process for neurones[sic] already lost. She said that seizures in mitochondrial disease are a sign that death is, at most, six to nine months away."
As regards Dr I (that we later found was Hirano), Points 100 & 101, 'theoretical' occurs numerous times. Point 102, in TK2 mice, 4% increase in lifespan. Point 103, he had treated FOUR patients directly (I think that was the group later increased to nine, or maybe it was other patients treated by his collaborators?), and NONE were infants. None of the wider group had had encephalopathy or seizures.

Point 104............and so on.

I suspect that out of all this complicated stuff, someone has perhaps picked on the MRI and 'no major pathology' line, and thinks that that is the lack of severe brain damage. Dr I, frankly, later (July) kept saying he didn't know and wasn't a specialist. Point 90 says it for me, the seizures in mitochondrial disease mean 6-9 months left. Dr I seems to have never treated a patient with seizures.

Dr I not having read the judgement or looked at the reports between April and July and the letter -- I suspect he was prodded into revising some of the statements of fact he had made previously (the blood-brain barrier and the numbers of TK2 patients).

But I still see nothing else in there to indicate where the 'no brain damage' belief came from. And also seems to me as if Dr I was slightly out of his depth as regards certain aspects, and was willing to say so in April, then in July......

Frankly, for GOSH to get a definitive diagnosis with genetic tests between admittance to GOSH in mid-October and mid-November (56 & 57), you really can't fault GOSH! The Rapid Genome Sequencing was part of a research project.

Taking all of this complex stuff, and reducing it to someone else looked at the MRI and says there is no brain damage seems increasingly ludicrous. And frankly top marks to the judge for doing what judges are supposed to do -- helping people make their way through this complicated mass of evidence and opinions and understand why he decided as he did as regards the fate of one terminally ill little baby........................

Very measured phone in on Radio 2 and as said upthread their health correspondent was v clear that this treatment wouldn't have worked given the timing and extent of brain damage.

I really hope today is the last time they're in court.

Taking him home doesnt seem reasonable for all the reasons stated above. I hope they can find a middle ground - perhaps even the hospital rooftop garden they took him to a few weeks ago. When Charlie is gone his parents have to live with all of this and if he could be moved somewhere a little away from where the parents have so many bad associations to pass away that would be better for them and a minimum disruption for Charlie?

Just caught up here. Very well thought out thread and I agree with almost everything which has been said. Thank you I have learned a lot.
I do agree that Dr Hirano is essentially involved in research and this most likely may have caused some of the problems.
However we don't know on what facts, if any, C&C are basing their statements. I do think their inability to accept their child's condition means that these must be met with a big dose of scepticism.
Also referring to the common belief, not on this thread, that Dr Hirano is the 'expert'. A pp who was either a medic or researcher said that the GOSH doctor treating Charlie had co-authored a paper on mitochondrial diseases with Dr Hirano.

This is like groundhog day. The reality is that GOSH has been Charlie’s ‘home’ since he was less than two months old. I agree that any attempt to bring him back to his parent’s home isn’t in his best interests; and given the inherent risks involved in moving him and the fact that he could pass away en route, surely it’s not in the best interests of the parents either. That has to be the worst case scenario, him passing away in an ambulance rather than in a familiar environment at GOSH.

The parents can still bring him home. I hope they have access to a cuddle cot or similar which might allow them to make memories in their family home without the piles of equipment, wires and crowds of medics which would be required in a transfer.

Will there be tweets from court or is it private?

Scottish - I asked that question on a previous thread. I was told (by a HCP I think) that although the ventilator is keeping Charlie breathing, it will not stop his organs failing (and many see his oedema as a symptom of that starting to happen). Therefore he could pass at any time.

I wish people would rtft before saying things aren't possible. They are, it would be logistically possible for Charlie to go home for withdrawal of care. None of us know how stable Charlie is on the ventilator, he may be very stable and suitable for transfer. The issue comes with acceptance and co-operation. This is one of the final decisions a parent can be involved in for their child, and a fairly major one at that. I can only speak for myself, but whenever I have been involved in end-of-life care, I go out of my way to ensure that the families wishes are met whilst keeping the child in the centre comfortable and settled. We offer parents a choice of where to withdraw care, who they have to accompany them (there is usually a couple of nurses who have cared most for the child that parents have a strong relationship with), whether they wish to travel with the child etc. Just because they have gone through a court process, doesn't mean that they shouldn't be offered the same options as any other family who are facing this nightmare.

He could be removed from the ventilator and pass away at GOSH but then his body could be taken home by his parents. You can get cold cots and cold blankets so that parents can spend a night or two at home with their baby.

Taking him home ventilated and removing this and then having to administer any palliative medicines or infusions sounds difficult in the home setting. And then there is the safety aspects for the staff.

Are they really so untrusting of Gosh that this would be preferable? :(

For me it's not a trust thing, having had a child long term in a hospital setting, if I'd been told she wasn't going to survive, I'd want some normality, something different, something less clinical for her last few hours.

I don't know what arrangements are in place at GOSH, but if it is too risky to transfer home, then I would, hope there is a home from home type setting with a hotcot so they can have all the time they need.

I'm sorry, but what happened to spending what little time is left with Charlie? Just like "we never leave Charlie" said in an interview with Farage outside the hospital or on the GMTV sofa.

"..but then his body could be taken home by his parents. You can get cold cots and cold blankets so that parents can spend a night or two at home with their baby."
I'm increasingly impressed by the current state as regards parents and babies. A long way from what happened when my mother had her miscarriages, when my dad was given something wrapped in newspaper and told to get rid of it.....................

As regards court, as I recall the last judgement said that Charlie could not be moved without an order from the judge. SO doesn't necessarily mean that GOSH are opposed to moving him, they can't without an order from the judge, and this may be them asking for one????

I think if its at all possible they should be allowed to take him home. But if not maybe they could bring the cot to the hospital and have it set up in a nice room for them with all his blankets/toys etc to make things a bit homey. I can understand not wanting to be in a clinical setting if possible.

Has this been posted ?

www.theguardian.com/commentisfree/2017/jul/12/charlie-gard-doctors-speak-out-hospital-staff

If the safety of staff can in some way be guaranteed then I also think they should be allowed to take him home.

@smilingmind

I saw that article a few days ago but haven't seen it posted on here before. The Guardian has had some thoughtful pieces on this case. I also respect the fact that they have (mostly) avoided opening articles on this subject for comment - comments on their website can get pretty vicious and there has been more than enough vitriol in this case.

A very moving phonecall on Radio 2 from a mother whose son suffered brain damage at 4 months old. She said it took over a year before she could accept how ill he was (she was convinced he'd recover fully) and when they made the decision to let him go (aged 5 from a chest infection they chose not to treat) she was "lost in grief" for over a year.

My point being Charlie's parents are probably utterly convinced that he could have been "saved". As others have said, they have been manipulated and taken advantage of to the point that they probably think up is down.