Charlie Gard 8

[cjt110]

New thread so that we can await this afternoon's hearing at 1400 (UK time)

Let's try to keep this one as sensible and measured as the past 7 threads have been.

Please note the MNHQ comment on thread number 7.

"Hi everyone,

..... We had to remove several parent-blaming posts, so we'd like to ask folk not to do this. We think we can all agree that this is a truly awful time for all involved and we just wouldn't wish it on anyone. If there's anything we could do with more of, it's support. We'll continue to remove reported posts that break TGs (if we've missed something, do feel free to let us know).

If we have to make too many deletions, we will need to look at removing the thread; which is the last thing we wish to do.

Thanks all"

I feel so desperately sorry for Connie and Chris atm. My 22yo son is sitting next to me, happy, healthy, fit and smiling. I am so thankful I'm not in their shoes, fighting for what they think is right for their child.

I don't believe for one second that GOSH are in the wrong. I think they too want the very best for Charlie.

All the way through I've been very much on the side of GOSH, and realistically I probably still am. But if someone asked me to make that decision about my children I don't know how I'd cope and it's making me feel a bit kinder to Connie and Chris.

Hope this is ok for all....

Timeline:
4 August 2016: Charlie was born a "perfectly healthy" baby at full term and at a "healthy weight". After about a month, however, Charlie's parents noticed that he was less able to lift his head and support himself than other babies of a similar age.

Approx Sept 16 Doctors discovered he had a rare inherited disease - infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS).

Oct 16 In October, after he had became lethargic and his breathing shallow, he was transferred to the Great Ormond Street Hospital.

March 3: Great Ormond Street bosses asked Mr Justice Francis to rule that life support treatment should stop. The judge was told that Charlie could only breathe through a ventilator and was fed through a tube.

April 11: Mr Justice Francis said doctors could stop providing life-support treatment after analysing the case at a hearing in the Family Division of the High Court in London. He concluded that life-support treatment should end and said a move to a palliative care regime would be in Charlie's best interests.

May 3: Charlie's parents then asked Court of Appeal judges to consider the case.

May 23: After analysing the case, three Court of Appeal judges dismissed the couple's appeal two days later.

25 May: Court of Appeal judges dismiss the couple's appeal

June 8: Charlie's parents then lost their fight in the Supreme Court. Charlie's mother broke down in tears and screamed as justices announced their decision and was led from the court by lawyers.

20 June: Judges in the European Court of Human Rights start to analyse the case after lawyers representing Charlie's parents make written submissions

27 June: Judges in the European Court of Human Rights refuse to intervene

Judgment 19/06 By Lady Hale, Supreme Court

ECHR endorses decisions by UK courts 27/06/17

GOSH Position Statement 13/07/17

Sky newsfeed

Just seen Bradley Lowery funeral on sky link. A great turnout for a special plucky little boy who fought long and hard. Thoughts and prayers to his family.

NOT a medic, just a scientist.

My understanding of the 10% figure (although the NY witness it came from seemed to mention a higher number at times), was the initial figure for the prospect of improvement as regards the removal of ventilation. For 9(?) patients he had treated with the type that effects the muscles (hence breathing difficulties), one had come off ventilation entirely, the others had had it reduced.

Okay, so even if the therapy could help with muscles and hence reduce the need for ventilation, in Charlies case the next question was, could the stuff get through the so-called blood-brain barrier and hence potentially help brain (cell) function? There is now some evidence that this might be the case. So, now on top of the 10% (or perhaps more) chance of an improvement as regards need for ventilation, we now have the question of can it help with his brain function. Which is where and why they are arguing about the extent of his brain damage. Because the therapy, even if it works in the cells and can improve lung function etc, cannot reverse brain damage.

The chance for improvement as regards ventilation and brain function could be less than the ventilation alone improvement, but no one realy knows how much less. I think, as think article explains:
www.statnews.com/2017/07/13/charlie-gard-life-support-ethics/?s_campaign=trendmd
the different attitudes in the US versus the UK health systems are relevant.

I could be totally wrong BTW, I'm not a medic, just trying to make sense of the various bits and pieces that have come out about the therapy and possible effects. Because it is hard to understand GOSH position when various papers keep trumping the 50% chance line (which frankly would look like a reasonable chance until you ask chance of what? 'Better' doesn't mean a cure, or what we usually mean by 'getting better', just 'not as bad' or progressing more slowly.)

As I understand it, the 1 in 10 came from the US doc yesterday who said that of 9 patients with TK2 one came off a ventilator due to increased muscle activity. TK2 is not what CG has.

The 50/50 thing, which I've seen spoken of is the US doc yesterday again. The chances of his drug crossing the blood/brain barrier he put at 10-56%,

So, if the drug crosses CG's BBB, then there is a chance that it could have up to 10% increase in his muscle. However, that is only if he responds as the TK2 patients have, and the 10% is really the top possibility.

So, what effect is that likely to have CG's quality of life? Perhaps he could move a finger? Or maybe flail an arm while he has another seizure. He still won't be able to see, or hear; the brain damage is irreversible.

What if it means he can breathe without the vent? He will continue as he is, locked into a dark world "beyond experience" almost certainly in pain. Silently screaming.

Live on sky news now. Representative for Gard family are speaking about the threats towards GOSH staff and the legal team for GOSH. family do not want any part of the vile abuse & threats made. Finally they have made a statement regarding this but surely this should have been said weeks ago?

SomeDyke explains far better. (I am clearly not a scientist!)

"Mr. Justice Francis made his declarations on 11 April 2017. Since then there have been numerous successive stays of them."

What are 'stays'?

Thanks

My understanding LovelyBath is delays in them being enacted, like stays of executions.

Hmmm that could have been said many months ago.

Lovely IT means they have approved them, continued. They have stayed (reaffirmed) the decision.

The TK type is the one not affecting the brain, and even with that only 1 could come off the ventilator out of 9. Which in itself is not good odds. Never mind that it is a less severe type and doesn't affect the brain.

funny that coz laura gard was certainlypart of the abuse on fb she is moderator

Thanks.

Maybe they are regretting doing things like FB groups for 'support' now.

Scientists, researchers et al seem to think they can cure everything! I always thought that once a brain cell dies it cannot be replaced. In stroke victims the brain finds different cells to do functions after original ones have died, hence physio, the.more you have the more the brain tries to utilise other cells to do the movement. But the cells that die cannot be resurrected. And new ones don't grow, just new routes to do things found. Like for instance an underground train network. I want to get from a to c via b, but b just got knocked out so I must now find alternative route so I will go a to d to c. That's what the brain does. I am sure someone is going to correct me here and await with anticipation to be corrected so as I can learn more about the most amazing organ of all.

If the odds for the muscle type are so low surely the ones for the more severe brain type must be miniscule.

You did fine Jux This is a case, I think, where probabilities being thrown about confuse people. Where newspapers use the phrase 'getting better' in terms of there will be some measurable improvement of something, knowing that most people use it to mean 'stop being ill' or 'cured'. Hence what was actually a small probability of X improving, then you have another unknown factor as regards the thing we care about (brain function and Charlies experience of being Charlie) improving, and instead this can become nice american chap says 50% chance of a cure -- in some people perceptions.

What I find hard to understand is why GOSH have only just decided to administer a small amount of oral morphine, when they had been saying how ventilation will be the potential cause of pain, and he's been ventilated for all this time (7 months). Why didn't they give it as soon as he went on the ventilator - does anyone know?

Maybe they thought he wouldn't be on it so long.

Always how interesting and how late.

Come on Justic Francis, please be as decisive as possible

The moderators of tech FB groups should have nipped the threats in the bud a long time ago. It appears it is only unacceptable now because of what the judge said. I really hope those on the receiving end of the threats do press charges- especially as they are genuinely trying to help a very poorly baby.

@SkyNewsAdele - 5m -The parents of #CharlieGard, Connie Yates and Chris Gard, arrive at the High Court ahead of another hearing. t.co/onF3B24FBe

Laura Gard posted yesterday telling members not to write such posts. But that was after the judge mentioned it in court.