Charlie Gard 9

[muckypup73]

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"

I'm off now. Peace to all and prayers and thoughts to Charlie and family.

I think Sostenuto has been quite measured.

The worst case scenario is that CG gets the treatment which has only the effect of allowing him to breathe unaided.

If the US doc agrees to treat him, the judge will check out those sort of possibilitie won't he, before deciding to allow it or not? That really wouldn't be in CG's best interests. Organ failure would take him, wouldn't it, and quickly? Please say yes! I've got this awful picture in my head just before going to bed.

Dr Hirano will be well impressed if he travels all this way to see this child and there is no recent test data!

I think he'll be OK about it at the end of the day.

He is an eminent researcher on a ground breaking project for a pharmaceutical product/substance that has patent applications on the go.

It's in his best interests to come over have the first hand knowledge as per why there is no recent data. And what that might mean in terms of his ability to collect all the test data he needs from a specific trial subject.

An internationally high profile trial subject at that. Who has attracted a style of support that can make even the most confident health professional feel a tad nervous.

Which ever way it goes, regardless of a lack of recent data, I can't see how it can be anything other than really informative for him.

Just read that Pence thing - it made me so cross, implying that the American system was better than the NHS because it allowed the patient to make their own decisions. Well I'm afraid when given a choice people don't always make the right decision when it comes to their health, if they did there wouldn't be such an obesity problem. I appreciate some people have medical conditions that lead to it, but in the majority of cases it's caused by not making the right choices around diet and exercise. Am I the only one who saw the photos in one report of C&C outside the court smoking a cigarette and wondered whether they pop out of GOSH to do the same thing and then go back and cuddle their son? I'll probably get flamed for saying it, and I accept that their stress levels are through the roof and everyone needs a crutch or release, (and I know a lot of doctors don't act on medical advice and smoke), but they're doing something highly harmful to their own health, whilst claiming to know what is best medically for their terminally ill son, which seems a bit 😕 to me.

Just reading in the MailOnline that the Gards' lawyers want Connie to be present at meetings with the American doctor because she 'knows as much as anyone in the UK about the condition.' That is excruciatingly embarrassing. I don't know how the doctors manage to deal with such a deluded person.

I agree that Connie needs to hear what everyone has to say, but that would have been possible via a video link. Instead, there had to be agreement that she could be physically in the room and the appointment of someone to oversee the discussion.

Medical specialists use their own language when discussing cases, and that's not always easy for lay people, no matter how much they've researched, to understand. When I worked at my local hospital, a classic example of that was a doctor telling a patient that their cancer was progressing; the patient misinterpreted that as their cancer getting better, but the doctor meant that it had spread.

Doctor-speak is all about clarity and precision. That's not how caring doctors speak to their patients or their patients' parents. If the specialists speak as they would normally do with their colleagues, then that's likely to be very upsetting for Connie to hear.

Is it possible that Charlie could just pass away while being on the ventilator? Or is that keeping him alive ? A previous poster said it looked like his liver and kidneys are failing and it made me wonder what would be the outcome if they stopped working.

LogicalPsycho Fri 14-Jul-17 23:44:09
Cinderella

I just don't believe for one minute Charlie's parent's have anything but hope that this treatment will work hence dismissing experts opinion.

If I truly believed my baby's brain was growing, I would insist on a brain scan being performed, to confirm why I had convicton in my beliefs.
But the parents have said Court must rely on a tape measure estimate, because all scans which could instantly prove them right or wrong have been blocked.

I disagree - I think they absolutely hope this treatment could 'cure' charlie and aren't taking in the facts by doctors. And I cannot criticise them for that - they've been given a shred of hope and I've changed my stance on this - I'm just thankfull I'm not going through it :(

It seems to me that Charlies parents aren't acting in his best interests anymore, this poor child is to have a very very poor life quality even if he does live much longer. Would any parent wish that upon their child?.

Imagine not being able to breathe without a ventilator pack 24/7 what would it be like for him hardly conscious of the world around him, needing to be tube fed, constantly confined to his bed unable to go out an openly join in the rough and tumble of a childhood? Is it ever likely given his brain damaged state that he will be able to hear talk even? To go to school to learn and all that comes with that?. To become an adult have children of his own?.

What do they want what do they really want? A remote 10 % unproven improvement of the condition he is in?.

I am really surprised by the American doctor what does he think really thing he's going to improve? It seems to me his ethics are somewhat questionable what does he want to do to experiment on the child?. Does he think he can give Charlie the massive improvement he needs despite his damaged ongoing genetic state?.

I don't think hes really any better then the mindset of the Charlies barmy army either.

The only sane sense is coming from the medical staff at GOSH and the UK courts.

Nowhere else at all:(

Connie is convinced he's going to be riding a bike like the girl in America she has on her FB page. so CA believe it too.

It will be interesting to hear what the American expert has to say.

Is it possible that Charlie could just pass away while being on the ventilator?

Yes it is. The ventilator can do all of the breathing necessary or a percentage, depending on the need of the person. I assume that it is performing at 100% for Charlie. At that rate (especially over a prolonged period of time) it can cause significant damage to the lungs. A patient like Charlie would have a significant risk of Acute Lung Injury. It is also a risk for patients on long term ventilation to get pneumonia due to excessive secretions building up in the airways.

Thanks to everybody for the considered threads. And the court updates. poor little boy.

I thought he was terminally ill, has that changed, or is that up to the new Dr to decide.

So sad, but I feel very proud of our legal system and of course GOSH.

@Maryz

Fully agree with your last post

I've posted above about possible reasons for his parents' views, but I think this bit from Maryz is pertinent: "his chances of ever actually recognising them [his parents] are vanishingly small".

Awful as it might be, don't they actually want to know the facts, one way or another?

I don't think they are seeing facts as information, more as obstacles to be overcome.

So each parcel of information is no longer a piece in the puzzle which will reveal the whole picture, but instead has become another fence to push down, so it doesn't become the immovable blockage that finally halts the march forward to a place of safety.

I'm not sure if siege mentality is applicable in this context, but perhaps something along those lines is in play?

Have any of CA actually been following proceedings today? They are asking why GOSH won't do the MRI and they must have 'something to hide.' Oh and someone has suggested that the US doctor sneakily gives the medicine to Charlie on Monday.

Even if the doctor decides that treatment would be futile, CA won't accept that as in Charlie's best interests and the factual medical reality. It will be a cover up or something, they are so entrenched in their position. No way can the parents begin to accept reality with that mob behind them.

stitchglitched Can't seem to quote you as I'm on my phone but yes to your last paragraph - I can 100% see that happening if the Dr declines to give the treatment, they will for sure say that GOSH have got to him as well, that they've threatened his family or something. They can't seem to comprehend that there are more calm, logical reasons for anything. They want life at ANY cost.

This whole situation is making me so upset, it's really affected me and I just hope with all my heart that beautiful Charlie isn't suffering while all this plays out.

When Charlie dies I think CA will disappear and go onto their next thing. They have a mono mindedness. GOSH have been very good and if I had a child who needed specialist care I would be honoured if they could be cared for at GOS.

(Obligatory and true preface that I feel very much for c and c. I believe they love Charlie, this is just an observation)
Wow this case has my head spinning after today

It's very clear that Connie believes she is an expert in Charlie's disease and wants to be at the center of every discussion had about her baby and believes her and Chris should have 100% say in what happens and total parental rights in this case. The head measurement debacle ( plus the very visceral response to the judge reminding them of what they said in April about Charlie's quality of life ) leads me to believe they are not deluded or mentally shattered like I had originally thought. I think they realize very well what Charlie's condition is but are never going to be able to say goodbye to charlie in the forseeable future. Which is so sad because they lost charlie months ago, and what they have is his preserved body 😥

These fundamental differences in views leads me to believe the gards and gosh are never going to come to an agreement and I think the judge is seeing that.
Judge is being incredibly lenient and my jaw is dropping tbh. Think hope) he's just trying to handle it delicately becase he knows how this will probably end? July 25th though?? But I still can't help thinking "but at what cost to charlie?" I just hope this sweet baby isn't in any pain . I'm glad he's on morphine .
God this case is sad

I think dragging on this case, despite being adamant he wasn't going to prolong this any further, is what's really confusing me here. Was the American doctors testimony that convincing ..because I didn't think so. That and acquiescing to every demand.

I think no matter what is said by the expert panel or how baldly they say it, CY is going to only hear what she wants to hear and will pick and choose what they say to fit in with her delusion that Charlie can be 'cured'. It's all just so terribly, terribly sad.

If the child's rights are indeed paramount in the UK, then why is this going on for so long? Where do C & C's rights end and Charlie's begin?