Baby Charlie Gard case

[TE44]

Blah blah I understand what you are saying, but to

This is a rare disease, it is not clear how the earlier scans differed from the most recent but it seems there was a substantial change for the parents to give up the fight. There seems to be an assumption that the parents could not understand the condition because they were emotionally overcome.

[Blah Blah]

I don't know why the hopsital's legal team had the latest scan results and not the parents. But that does not change the underlying apsects of the case, that there was no treatment that could help this child and stave off the inevitable. That is what this case was really about.

[Blah Blah]

I think the parents have though shown a contant inability to understand the prognosis. For example, the mother claimed that the child's head was growing when scans clearly show it wasn't. She also claimed he was responsive and could see when the medical evidence could show the opposite. So there is a constant challenge of belief from the parents throughout all the court cases. Obviously, they were going through immense pain themselves and that will often cloud thinking. And it is a normal human response to try and find any glimmer of hope. They have never acknowledged that this condition has no known cure.

[Loz]

TE44 Wrote:

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> This is a rare disease, it is not clear how the earlier scans differed from the most recent but it

> seems there was a substantial change for the parents to give up the fight. There seems to be an

> assumption that the parents could not understand the condition because they were emotionally

> overcome.

The parents gave up the fight because the doctor that was giving them false hope changed his mind after seeing the new scans.

And, it seems, finally reading Charlie's other medical records which he had not yet read.

[DaveR]

"I thought conflict of interest was taken as the norm now or is our NHS free from that.

I think the QC for gosh should beunder scrutiny, although the results of the scan were

given just before the court case, who gave permission for access by the legal team before the parents were told.For the parents to hear in that way does not reflect well on respect shown to them."

I can't see any basis for any of this. How is it suggested that the NHS had a conflict of interest in this case? What are the grounds for criticising the lawyers for GOSH? If there had been any problem with disclosure you would expect both the lawyers for the parents and the judge to have said so.

[TE44]

If you can't see anything fucked up with the parents finding out the results the way they did, or don't see any connection to a break down of communication or disregard then that's your view.

I would have thought it fell outside of the law,

the couples solicitor has argued it should not

have came out then. I suppose it's easier to scrutinise the parents.

http://metro.co.uk/2017/07/22/charlie-gards-dad-screams-evil-when-told-about-devastating-mri-scan-6797992/

[TE44]

http://edition.cnn.com/2017/07/25/health/charlie-gard-us-doctor/index.html

Parents back in court to bring him home to die.

[Loz]

TE44 Wrote:

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> If you can't see anything @#$%& up with the

> parents finding out the results the way they did,

> or don't see any connection to a break down of

> communication or disregard then that's your view.

You are right - it shouldn't have happened like that. My reading is the results had just arrived, so court should have really been adjourned for both sides to examine them.

> I would have thought it fell outside of the law,

> the couples solicitor has argued it should not

> have came out then. I suppose it's easier to

> scrutinise the parents.

Actually, it seems the couple's solicitor seems to have thought it should not have been introduced as evidence at all. From your link: "But the couple?s lawyer, Grant Armstrong, argued that the hospital should not have told the court the scan results as it was medical information and should not have been put in the public domain."

Considering the case was entirely pivotal on medical evidence, that seems a rather strange view.

[Blah Blah]

Yes, strange indeed, as this final hearing was to consider 'new' evidence. And a most recent scan would surely have qualified as new evidence, if independent doctors were presenting a counter. From what I understand, there was no 'new' treatment possibility anyway, as the American doctor concerned had spoke with GOSH back in December and it had been agreed back then that the treatment would have no level of impact to change prognosis. So the claim the parents make that treatment could have improved prognosis to the extent of the child leading a healthy life (had it been tried earlier), and that GOSH doctors somehow failed in their treatment, is false. It is quite clear that GOSH did consult with experts around the world as part of their treatment in the early stages of diagnosis, which is what you would entirely expect from a leading hospital. I don't think the public understands just how much cutting edge research emanates from our hospitals. The NHS employs some of the best experts in the world in many areas, feeding into some of the best global research networks.

[TE44]

Loz, I was confused by that link myself. There has also been conflicting reports on when the US doctor first saw Charlies results. And reports of his deterioration.

Blah blah yes it would have to be looked at as evidence the problem is the way it was given.

How horrendous for them.

[malumbu]

I do some volunteering where transport is often provided by the Jimmy Mizen Foundation - a teenager sadly stabbed to death ten years ago. It makes me sad when I see his face on the mini bus but at the same time the family have made something good out of this. http://forjimmy.org/tag/charity/

How much money is being spent on this case? The money could be spent on supporting research into the disease or something else to commemorate the short life of this poor soul.

[Capitals]

I understand what are saying however how would you justify the fact that the parents were not allowed to take the boy home to die. Even now the judge has to decide on this matter. Why judge? Why doctors prevent the parents from taking the boy home?

[Loz]

I think they should be allowed to take him home, but it may not be possible.

From the Beeb...

GOSH said that as far as it is aware, invasive ventilation is only provided in a hospital setting.

"It requires air to be forced into the lungs. For reasons that are obvious, that process and the correct, safe positioning of the tube have to be monitored by an ITU trained nurse at all times, with an ITU doctor on call and close at hand. Those resources cannot be provided by GOSH to Charlie at his parents' home.

GOSH is aware that there are other practical problems one being that the ventilator does not fit through the front door."

[Blah Blah]

Because taking him anywhere is not that simple - crossed post with Loz but the practical issues are explained there. It also reported that the parents are asking for life support to be continued at their home, for days - so yet again, no agreement from them on withdrawing life support.

[rendelharris]

I imagine GOSH are also wary of what could happen if these poor parents, who one doubts are capable of thinking too rationally by now (God knows I wouldn't be), suddenly decide they won't allow withdrawal of life support once he's home - prospect of doctors having to enter the house with a court order accompanied by police officers in front of the media.

[Capitals]

It looks like a very complex case.

[edcam]

Although I feel terribly sad for the plight of these parents, I do wish they'd think about the child's best interests.

[TE44]

They wish to spend time with there son in an environment that is free from animosity, why can that not be in the childs best interest. Its not

as if Charlie will be having any different treatment than he is having. People have been moved from other countries to die at home, this is not an unreasonable request in fact I believe it will be

In Charlies interest.

[JoeLeg]

All very reasonable, but you're assuming that the technology is keeping him alive can be moved to the home, as well as - as pointed out above - they allow the support to be turned off. Once he's in their home it can get very legally dodgy in that respect.

Without the equipment, he won't make it to the front door.

[TE44]

http://www.express.co.uk/news/uk/833210/Charlie-Gard-latest-news-will-baby-go-home-to-die-High-Court-case

The parents have agreed for Charlie to die in a hospice. Parents feel hospial have put obstacle

After obstacle in there way.

[edcam]

What Joe Legg said. Surely the imperative is for him to pass away in the safest, most comfortable way possible? That entails the immediate availability of the best specialist medical care available, which wouldn't be possible at home.

TE44 Wrote:

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> They wish to spend time with there son in an

> environment that is free from animosity, why can

> that not be in the childs best interest. Its not

> as if Charlie will be having any different

> treatment than he is having. People have been

> moved from other countries to die at home, this is

> not an unreasonable request in fact I believe it

> will be

> In Charlies interest.

[TE44]

Why not, they were prepared to pay for the care needed.I cannot understand how people would not think the parents are aware.

[Loz]

TE44 Wrote:

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> http://www.express.co.uk/

>

> The parents have agreed for Charlie to die in a hospice. Parents feel hospial have put obstacle

> After obstacle in there way.

As of this moment, the parent have not agreed anything - your link doesn't even say they have. The case goes on in the high court.

I agree with you that it would be good if they could take him home, but it seems that is just not practical. Apart from anything else, it was said that the oxygen equipment alone won't fit in their house - we're not talking a tank of gas and a mask here. He's in intensive care being kept alive by some pretty serious medical kit. You can't just recreate that in someone's home.

[rendelharris]

TE44 Wrote:

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> They wish to spend time with there son in an

> environment that is free from animosity, why can

> that not be in the childs best interest. Its not

> as if Charlie will be having any different

> treatment than he is having. People have been

> moved from other countries to die at home, this is

> not an unreasonable request in fact I believe it

> will be

> In Charlies interest.

I don't wish to sound harsh, but from all the evidence I've read poor Charlie will not be aware of any changes in his surroundings, I don't think the question of benefit to him really forms part of the current action over where and when he should die.

[DulwichFox]

People, especially the elderly often wish to die at home in familiar surroundings with their family around them.

Charlie has no concept of his surroundings, his own home or his family.

It is possible Baby Charlie would not survive the journey home.

The Hospital / Hospice is better equipped to deal with the situation when Charlie loses his battle.

DulwichFox