Charlie Gard Case 5

[LovelyBath77]

A new thread to follow on from the others about this case.

I don't understand the issue with medical records, they will all have been used by both sides for the previous hearings won't they?

So they need the latest couple of weeks which will be based in the ITU unless as a pp said it's thought to be detrimental or is it complicated by Charlie having a legal guardian now?

Having done this in another big public service provider, if a request is made for a complete copy of absolutely everything, it means everything. Not just photocopying what's in that file but searching through all the computer systems to pull up any emails by any staff referencing the person at all, all of which have to be printed off, vetted and edited not to share confidential info as often people talk about more than one patient in an email to a colleague, any scans on file, absolutely everything has to be downloaded, then the whole hard copy put in date order, (and with complex and contentious situations this is massive as everyone is recording everything as everything is potentially a grounds for legal challenge) listed and copied and then one copy given to the requester and one kept as a copy of what was given. It's several days of work involved.

The belief was very strong that absolutely there was a right for that person to have a copy of everything, and it was never grudged. However there were a few particularly contentious situations where that person would request this to happen multiple times, convinced that there was information being withheld or they were being lied to, so would put the request in for the fourth or fifth time and someone would have to do the whole process all over again.

"they will all have been used by both sides for the previous hearings won't they?"

Yes, but they would have been (largely) kept confidential by the legal teams.

Tomorrow will be such a difficult day for everyone no matter what their views. So sad.

I have to be honest and hope the judge allows the child to pass peacefully. I cannot bear the idea of him being experimented with.

Will they have things like recent scans, wonder how much they know about what is going on internally with Charlie. I know things like CT scans can show a lot. I know CA are saying the brain scans don't show damage but sometimes they are limited in what they can show? Is that correct. However other tests have shown seizure activity. I expect they will be contesting things like head circumference measurements as well.

However the judge simply wants to look at new evidence of potential treatment, is that right.

Suppose all we can do is wait for today and the judges decision.

Today my daughter goes to theatre ( she is sleeping at the moment ) to attempt a new central although theres a chance they will not get one in as she has run out of access.
With no line she can not survive longer than 4 weeks.
I understand how they feel but I just can not agree with them on any level- I just can not.
I have tried and my morals stand.

So does there have to be significant evidence submitted today for tomorrow to go ahead?

I hope all goes well today for your daughter, lonelymummy. Thinking of you.

Lovely bath mito os very different there may not be signifigant structual damage that shows on a mri.
As its the cells.

For instance my daughters bowel looks normal in tests like ct/ x ray / endoscopy but does not move or absorb due to the cells.

Oh Lonely

Everything crossed for your little girl.

I think tomorrow will go ahead anyway, based on the evidence today. I'm not totally sure though.

Yes, this is why I think CA keep saying there is no evidence, as it doesn;t who's up in the scans. I think GOSH said months ago, he had some organ damage, so wondered about that. Thanks Lonelymummy for explaining.

doesn't show up, I meant.

I have a feeling it will drag on a bit longer.

Can't see a time/date of equipment being switched off being disclosed either. All so sad

@Lonelymummyof1 will be thinking of your little girl today

LovelyBath77 Yes, Charlie has been scanned several times; his parents have already shared one of the MRI reports publicly (or parts of it).

You can't give a young child multiple CT scans, well you can but it's dangerous. They have given him MRI scans more than once.

The cells do not have enough energy and effects different organs.
It is why DD is not eligible for bowel and liver transplant because it would just happen again as it was not a structually damaged bowel but a cellular damaged bowel.

His eeg reports / seizure activities and charlies actual responses will show the true extent x

@Lonelymummyof1

Thinking of you and your little girl. Hope all goes well.

Rachel0Greep, sorry but that made me laugh.

I thought I read somewhere that the MRI scan reports that have been shared everywhere were from before Charlie experienced a prolonged period of seizures. Form memory it (a court report?! Can't remember sorry) said he had something like 17 days of damaging seizures.

I have just messages GOSH via their FB page too to show my support. I think it's important they know that a lot of usstill think highly of them and that as a public we still have faith in the decisions they are making.

I can see it dragging onfor longer, not sure how though, because it needs to end and end today, otherwise it will just carry on and on and on and I do not blame other hospitals for not having Charlie,, who on earth would want to put up with what Gosh have??

The Telegraph is saying that Charlie's parents feel 'stitched up' at only having until today to provide the new evidence. I really don't think they are thinking beyond each day and originally wanted the long date just to buy more time and whip up more frenzy and support from the public and America.

CA seem to think the parents have a great dossier of new evidence that they weren't able to present on monday and will be doing so later. Not sure how things are going to develop today.

Does anyone know, if no evidence is presented today will there even be a hearing tomorrow?

Thanks MissHavishamsleftdaffodil that sounds more likely.

@lonelymummy, I hope that the central line succeeds today.

I had no idea that GOSH parents get a daily allowance for food, seems very unfair that this is not in every PICU. I wonder if it's paid for my donations?

I understood from the GOSH lawyer that it only went back to court as they were threatened with judicial review from the Gard team.