Charlie Gard 10

[user1498911470]

Hi guys new thread.

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"

Starting now as 9 will fill up quickly.

Does anyone have a link to the parents' court submissions? (I have read those of GOSH)

Yes, I think the judge is a very clever man and has a masterplan.

I hope he is trying to formulate a means to circumvent all this court business in the future - to make these things happen much more quickly and effectively.

One great difficulty I have is the fact that they haven't even got FDA approval to use this drug on Charlie. In theory at least, they could go through all this only for the FDA to say no. I get it that the FDA would say yes on compassionate grounds if it appears certain that the patient will otherwise die soon anyway; but doesn't the FDA also look at the patient's potential quality of life when considering this?

What if the mum and dad disagrees, and one wants the child to live at any cost, and the other can't bear to see it suffering indefinitely?

Sorry to change the subject, and this is more just a rhetorical question, but I wonder what would happen in this case if either Connie or Chris changed their mind but the other didn't. I'm sure that must happen in these situations and it must be heart wrenching.

"So zeezeek do you think it unlikely that the treatment will even be approved for use on Charlie whatever the American doctor says"

I don't know. I think that there are procedures in the UK for fast tracking a drug, but it is not something that I've ever experienced and I have never been involved in that type of trial.

I suppose that it might be different because this is technically not a new drug - but an existing drug used on a different set of patients. That way one could argue that all the safety tests have been done, so maybe MHRA would agree to it being used in that way. However, there would still be processes to go through and a protocol for treatment agreed.

I can only tell you about the processes that I have to go through for my research - which is mostly based in adults with capacity.

Ethically, as a scientist and considering the current condition of the child - I would hope that compassion overcomes the need for a potential scientific breakthrough. I would go as far as to say that I do not know of a single scientist who would agree that this is a good idea for the patient.

What appears to be a new article has been published in the Mail Online calling Hirano "Lily the Pink": article

Great post tinsel

The more I think about the judge the more I believe that he is trying to avoid a situation where C&C have to be removed from Charlie's bedside whilst life support is withdrawn. I think he is hoping that Connie will come out of the meeting tomorrow having drawn new conclusions over the possibility of the treatment being successful and understanding GOSH's POV on her own.

What I do worry about is if that happens and Chris isn't at the meeting, I can't imagine how hard it would be for Connie to bring him around to a different conclusion.

the story that is being touted as proof that the drs can be wrong.....the kid can only communicate by blinking and can only move his head and arms. it's hardly a success story is it? it's hardly a full and independent life?

it certainly wouldn't be my idea of a life-if my family had me kept alive so that i could spend the rest of my days only able to move my head and communicate by blinking i would furious-except they wouldn't know that because i wouldn't be able to communicate my rage

Sorry to change the subject, and this is more just a rhetorical question, but I wonder what would happen in this case if either Connie or Chris changed their mind but the other didn't. I'm sure that must happen in these situations and it must be heart wrenching

Nothing, probably. In terms of the case and the delays and prolonging CGs life. The CA snowball would carry on with whichever of them was still involved, and the other would probably get a lot of hate mail.

he's not CALLING the dr lily the pink-he's saying the dr is acting as if the treatment is a lily the pink potion.
do you know the song?

We'll drink a drink a drink
To lily the pink the pink the pink
The saviour of our human race
For she invented, medicinal compound
Most efficacious in every case

Mr freers had sticky out ears
And it made him awful shy
And so they gave him medicinal compound
And now he's learning how to fly

Brother Tony was notably bony
He would never eat his meals
And so they gave him medicinal compound
Now they move him round on wheels

We'll drink a drink a drink
To lily the pink the pink the pink
The saviour of the human race
For she invented medicinal compound
Most efficacious in every case

Old Ebenezer thought he was Julius Caesar
And so they put him in a home
Where they gave him medicnal compound
And now he's emporor of Rome

Jonny Hammer, had a terrible st st st st stammer
He could hardly sssay a word
And so they gave him medicinal compound
Now's he's seen, but never heard

Chorus

Aunty Milly ran willy nilly
When her legs they did recede
So they looked on medicinal compound
Now they call her milipede

Jennifer Eccles, had terrible freckles
And the boys all called her names
But she changed with medicinal compound
Now he joins in all the games

Chorus

Lily the pink she turned to drink
She filled up with paraffin inside
And despite her medicinal compound
Sadly piccalilli died

Up to heaven her soul ascended
All the church bells they did ring
She took with her medicinal compound
Hark the herald angels sing

The professor stated that there was a 10% chance of coming off the ventilator with the drug.

I have experience in adult patients but not paediatrics but in adults who are ventilated the chance of them coming off the ventilator after about 2 weeks is very slim. This is because the respiratory muscles weaken as they are not being used and the patient becomes ventilator dependent.
Charlie has been on the ventilator for some time now so I very much doubt he will ever get off it even with the trial drug

LikeAFish

To add to what you said, they also take private patients from all over the world.

I believe they removed Prince Charles' appendix many years ago.

To be fair to Dr Hirano, I don't think he has made exaggerated claims, has he? It's the parents who have made claims, citing (misrepresenting?) his work. Initially he said he thought he could help, then when he found out about Charlie's brain damage he said he couldn't, now he says he doesn't know.

Nothing, probably. In terms of the case and the delays and prolonging CGs life. The CA snowball would carry on with whichever of them was still involved, and the other would probably get a lot of hate mail.

Yes that does make sense, good to know it wouldn't affect the case but it would be awful for the other parent with CA waiting in the wings to paint them as the devil incarnate.

My understanding, and I am quite possibly wrong, is that there are two different issues with this drug.

The 10% possibility of coming off a ventilator has been proven and this is a result of the medication being used to strengthen the muscles of patients with less severe mitochondrial diseases.
However Charlie's brain damage may mean that, even if his muscles are strengthened, he will be unable to breath unaided as due to his brain damage no signals will be sent from his brain.

The 50% possibility of it passing the blood brain barrier is unproven as it has never been used on a patient with Charlie's condition.
I think if it passes the blood brain barrier it is hoped that it will restore a small amount of brain function.The doctor could not give any figure about this but said more than 0%.
However medics at GOSH believe Charlie's catastrophic (their word) brain damage is irreversible.

Yes, I know the song and it is a reference to Lydia Pinkham who developed cures of questionable efficacy.

But the key issue with the "10% chance of coming off the ventilator" is that it's based on such a small sample - 10 people had the treatment and 1 is off the ventilator. It can't be relied on as a true statistic.

The professor stated that there was a 10% chance of coming off the ventilator with the drug. I have experience in adult patients but not paediatrics but in adults who are ventilated the chance of them coming off the ventilator after about 2 weeks is very slim. This is because the respiratory muscles weaken as they are not being used and the patient becomes ventilator dependent.Charlie has been on the ventilator for some time now so I very much doubt he will ever get off it even with the trial drug
I have also worked in ITU and have some knowledge of reseacrh methods and statistics.
The professor's statements lack validity for several reasons:

1. It is a tiny sample.
2. The sample is of adults with a different condition to Charlie's and is therefore not representative.
3. Charlie has been ventilated for much longer than the patients that he refers to (AFAIK)

Yes quite cave mum and Iris65

The other issue is that when Dr Hirano refers to 'no structural damage' he is actually referring to the macro (gross) structure of the brain shown on MRI. There is a difference between this and the micro structure at the level of the neurons and the neural networks.
I haven't read the detailed transcripts of his evidence but this stood out to me from the media reports.
An analogy would be looking at a tree which looks real and intact: trunk, branches, twigs, leaves but on further examination is actually made of plastic, so is without all of the internal structures and cells that are needed to be alive as a tree.

I see Laura Gard did another thunderclap on the CA FB page, with the main line being a '56% chance of meaningful improvement'. So not only is a family member being deliberately misleading with regards to the evidence, people are sharing this across social media. No wonder people are up in arms about this given that no context is given on what that 56% means.

And.... the Pastor is still asking people to donate to his funds even though he is back in America.

Will there be a publicly available transcript of the specialists' meeting, or will this be confidential?

It will be almost certainly be confidential

I'd hope it would be confidential. But in this case I have started to doubt many things.