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 Azreal13 wrote:
I believe it was raised via gofundme or similar, and is in the control of the parents, not GOSH, so I'm not sure how much of what you say is applicable.

Especially as a quick Google shows that his parents have donated it explicitly to help treat other kids in the US now they've conceded that Charlie won't receive the treatment.

Yeah. They are ones in charge of the funds raised. However they might raise eye brows if they pulled up home in a Porsche but GOSH, NHS are no part in fund management.

Court case carries on from i think 1PM today.
so we shall see if Charlie can go home.

However the Logisitics from a Hospital, Via, Helo, to a Private waiting mediac, all custm build seems alot different to a adhoc set up in a flat with a door there unsure the it can get through .

Seems a builder offered to alter doors, but how long will that take?

Some of this planning would surely of needed to happen weeks ago.

So it looks like he will be moved to a hospice and then they will withdraw his life support shortly after.


http://www.bbc.co.uk/news/uk-england-40745988

Yeah. Looks like. They keeping things quiet for obvious reasons.

There was a whole bunch of legal argument based on matters from case requirements to insurance, and more.

Given all the arguments, at least a answer has been reached, and however sad the story, it has reached a ending that is centred on the Childs welfare.

Charlie is one who should be put first.

A hospice is a good situation, mid-way between the clinical sterility of a hospital Intensive Care Unit and the technical impossibility of adapting the family home.

It is time for the parents to let go. At a very blunt level, the more they prolong their son's ordeal, the more resources they divert from the support of other infants who might have a realistic chance of a better life.

 Kilkrazy wrote:
A hospice is a good situation, mid-way between the clinical sterility of a hospital Intensive Care Unit and the technical impossibility of adapting the family home.

It is time for the parents to let go. At a very blunt level, the more they prolong their son's ordeal, the more resources they divert from the support of other infants who might have a realistic chance of a better life.

Best they could do short of someone donating the use of a large London ground floor flat with least 3-4 bedrooms probbly to fit all the required medics, the family and gear they need to keep him alive.

It would have been nice if there would have been a way for them to finally take him home, but sounds like he wouldn't be alive long enough to make it there.

 d-usa wrote:
It would have been nice if there would have been a way for them to finally take him home, but sounds like he wouldn't be alive long enough to make it there.

It was not that. They could move him with life support but the kit was too large to get in flat, and needed a 4-5 strong medical team with him to monitor gear as a ICU nurse and doctor, specialist doctors and nurses to support.

Its abit too much for a London flat.
Not the private, and quiet family time they after.

I don,t think anyone has answered questions like did it have the power ampage to support all that kit, security for Doctors and Nurses due to media etc, media, they know the address, and would be vultures. Was there room for all the gear and staff.

There needed to be a plan for quite a few things.
Also impact on area.
Bringing a hoard of media down on a London residential street.. Might upset there local neighbourhood of things become chaotic circus.
The hospice is secret, so the media issues is less of a problem long as people keep mouth shut.

That's what I was getting at, for him to go home it would require to unhook him from everything. So even if we would go home to die, he would likely be dead before making it.

I know when our little one was in the NICU one of the worst feeling we had was when my wife was discharged and we went home without our daughter and the empty car seat in the back.

There's portable gear. But again for ICU, portable is not always so small.

From portable battery gear to ambulance with own ringmain power supply and heavy duty battery backups. And home inside on battery to inside on mains.

It could be done. They had worked out how to medivac to jet if going to USA. But that I think used a air ambulance for speed and less jolts, and again, had own heavy duty full power system on board.
But there where tons of issues.

To do would of taken weeks of planning id think. And a flat or location with more space and fairly easy access from road. Minimal stairs, and wide doors.

That sounds tough, least there happy, healthy and thriving now though hopefully.
I was in Hospital for a week or two as a baby as I was underweight. Hospitals peform some nigh on miracles at times.

Charlie Gard has passed away. At this stage it was inevitable but it still hits you hard.

That was quick. I thought they had nurses and a doctor willing to volunteer to cover a few days care.

Granted it might not of had the level of infrastructure tp support Charlies ICU requirements sadly.

Shows how bad a state he was in I suppose.


But it was good, he suffered more than enough by now.

 welshhoppo wrote:
Shows how bad a state he was in I suppose.


But it was good, he suffered more than enough by now.

If that's true. I think I see one of there reasons for not liking home idea.
Would he of made it?

I guess sadly they know the hospice run and have more experience in delivering patients to it safely and know what kit they can get there.

 jhe90 wrote:
That was quick. I thought they had nurses and a doctor willing to volunteer to cover a few days care.

One doctor volunteered to do so at home but was woefully underqualified and presumably didn't have the expertise to actually determine how long he'd be covering for. I don't think anyone mentioned any timescales that they expected the baby to last after being moved. The final court hearings were about how long they could delay turning off support so I guess the expectation was that death would be near-instant once care was stopped.

I've got 2 kids. A 3 year old girl and a boy more or less Charlie's age.

Reading in the newspaper, on the news, all I could think was "Why are you doing this?"

Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.

Disgraceful.

 Freddy Kruger wrote:
Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.

Disgraceful.

They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.

 Ouze wrote:

 Freddy Kruger wrote:
Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.

Disgraceful.

They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.

Uf we trust the GOSH court section.
The offer was made before he had seen tests, and full info.
Had not got tests.of any kind to back his claims
Had cause to gain money from the treatment /future success and deployments of it.

All in all, I think sadly desperate parents had what seemed like a amazing offer but crumbled under the judges harsher questions/GOSG QC.
The Doctors bound by medical rules could not say as much, as the parents etc.

It's worth noting that the court decision shouldn't also really be considered "against" the parent rather than "for" the child.

There was a good article on this from the BBC. There was an independent memeber of the family who sided with GOSH on the issue.

And on the differences between US and British doctors and patients rights.

 Ouze wrote:

 Freddy Kruger wrote:
Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.

Disgraceful.

They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.

Given I'm sure Ives heard it said that they thought they could have had a healthy, happy baby if treatment hadn't been withheld/had been applied sooner, and given what I understand of his condition meant he was unlikely to survive for more than a few years irrespective of medical intervention, I'd say they'd been given some pretty big promises from somewhere that didn't have any real substance.

Here's the article I was taking just now.


Charlie Gard: A case that changed everything?
http://www.bbc.co.uk/news/health-40644896

Babies and infants die all the time, let alone all the cases of stillborns, even in western and modern countries.

It's horrible, but that's the way it is.

I know that "hope is the last thing that dies", especially from the parents point of view, and I know that this sounds cynical, but I get the feeling that Charlie suffered needlessly, and it would've been for the best if he had died sooner. That way more time would've been freed up for the nurses and doctors to treat other patiens, and his parent would've been able to start moving on earlier. This case isn't that different from many other cases of babies suffering from terminal diseases - it just got the medias attention.

Basically, sometimes you just need to let go.
This story is horrible, but it's nothing new, and it wont be the last time it happens.

And before I get bashed for being a coldhearterd bastard, I'll just mention quickly that I have a sister that was stillborn. Not as bad as having a 11 month old sibling die, but none the less...

 Azreal13 wrote:

 Ouze wrote:

 Freddy Kruger wrote:
Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.

Disgraceful.

They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.

Given I'm sure Ives heard it said that they thought they could have had a healthy, happy baby if treatment hadn't been withheld/had been applied sooner, and given what I understand of his condition meant he was unlikely to survive for more than a few years irrespective of medical intervention, I'd say they'd been given some pretty big promises from somewhere that didn't have any real substance.

There's also quality of life.
I'm all for saving lives if people have a chance to live a life, properly to some standard.

Sadly in Charlies case that was not going to happen.
Out medical aid is so advanced we can keep people alive in states that they are up to brain dead, Coma for years, when there totaly forgotten who they are and who family is and more.

The question has become not if we can, but one of when we should stop and when the treatment does more harm.
Its a very difficult situation to make choice.

That's the biggest thing for me. Quality of life.


Even if the treatment had worked, he'd have little to no sensory system, he would die just as he was beginning to understand the world. He'd need full time care. His parents would have little to no life for the time that he is alive and you'd only be delaying the inevitable.


Hope is indeed the last thing to die.

 jhe90 wrote:

 Ouze wrote:

 Freddy Kruger wrote:
Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.

Disgraceful.

They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.

Uf we trust the GOSH court section.
The offer was made before he had seen tests, and full info.
Had not got tests.of any kind to back his claims
Had cause to gain money from the treatment /future success and deployments of it.

All in all, I think sadly desperate parents had what seemed like a amazing offer but crumbled under the judges harsher questions/GOSG QC.
The Doctors bound by medical rules could not say as much, as the parents etc.

I'm aware of what you're saying. What I'm saying is at the time the parents made that call, it seems very likely they didn't know that, so it seems wrong to judge them now based upon that. At the time, they thought they had the best interests of their kid at stake - just like all the other player did, except for the one US doctor who really is responsible for this whole mess.

 Ouze wrote:

 jhe90 wrote:

 Ouze wrote:

 Freddy Kruger wrote:
Don't get me wrong, my heart goes out to them, but they needed to see sense, not clouded by their false hope. Charlie was in a really bad way. He would have had virtually no quality of life, and it would just prolong his suffering at that point.
Instead of letting him die with dignity, quietly, they instead created a media scrum.

Disgraceful.

They didn't have the benefit of perfect hindsight as we do, and we don't know what promises that US doctor made that perhaps were not reported. It seems unfair to judge them.

Uf we trust the GOSH court section.
The offer was made before he had seen tests, and full info.
Had not got tests.of any kind to back his claims
Had cause to gain money from the treatment /future success and deployments of it.

All in all, I think sadly desperate parents had what seemed like a amazing offer but crumbled under the judges harsher questions/GOSG QC.
The Doctors bound by medical rules could not say as much, as the parents etc.

I'm aware of what you're saying. What I'm saying is at the time the parents made that call, it seems very likely they didn't know that, so it seems wrong to judge them now based upon that. At the time, they thought they had the best interests of their kid at stake - just like all the other player did, except for the one US doctor who really is responsible for this whole mess.

What I'm saying is the.Doctor was in the wrong and exploited a desperate family for personal gain..

 d-usa wrote:

I know when our little one was in the NICU one of the worst feeling we had was when my wife was discharged and we went home without our daughter and the empty car seat in the back.

We felt the same way when it happened with my wife and our son. Watching her trying to breastfeed once his lungs had developed enough and (the first few times) failing was pretty heartbreaking too.
Leaving the hospital with him a week later made up for a lot though.
Hope something like it won't happen this time (she's due in January).

When our second one was born and started crying, which the first one wasn't able to do, I cried like a little baby myself as the stress and anxiety about a potential repeat washed away.

I get both perspectives, medical caretaker and parent, in situations like that. After the scare and NICU stay our first has turned into a wild 3 year old.

There is no doubt about this, its pretty sad all around and stuff like this get repeated every day all around the world, and the vast majority we don't hear about let alone debate. Its easy to say its life but when it involves one of your own that you would die for, I am sure many just dont want to give out hope.

Something I saw when I was in college I will never forget. I was in a book store on a weekday afternoon, and in the CD section (this is when some book stores also sold music), I saw a mother flipping thru CDs while she had her son with her. He son must have been around 12 or so, and was in this crazy wheelchair-like device with all sort of gear. From my point of view, he was a vegetable, but I had no idea of his actual medical state. I felt bad for the mother, who seemed to be in her mid 30s, attractive, obviously educated and doing pretty well, devoting her life to her son.

I say that because this chair-thing didn't seem easy to take around. To hook the kid up, take him out to transport him, etc, must have take a lot of effort. And here she was, shopping in a book store, trying to live a normal life, taking her son along who didn't seem to realize a world existed.

I assume that her husband worked (as this was like a Tuesday afternoon), and made enough to provide for the family. She was dressed well, and taken care of. Even the kid was dressed well too. So I assumed the guy's career allowed for her to devote 100% of her time to her son.

What I thought about seeing this tho, and I wonder what happens to many, is what happens if the kid should out-live their parents? Its probably rare that this happens, but what if a parent passes away and now a single parent cannot provide the care or money to live? What if both parents pass away and this child is left? I highly doubt whatever system they get put in wouldn't care for them like this mother was. And I am not sure what that cost is to tax payers either.

I am not sure what the answer is. On one extreme, devoting so much to a person who will never amount to anything seems like a waste of effort. The Spartans and Nazis dealt with situations like these in pretty brutal ways. On the other hand, understanding the bond and love a parent has for their kid is admirable too. I asked my friend who has a kid what he would do if his daughter became like that, and he just thought for a second and replied, "I would take care of her."

So at the end of the day its really about love. You cant be too hard on Charlie's parents, they were just trying to do whatever it is they could, even if its more obvious to us there wasnt anything they could do.

Such a sad case, but it's worth pointing out that Charlie was severely brain damaged and would never have an independent life.

As I understand it he was blind, deaf, and unable to swallow or breathe unaided.

The experimental treatment would not have changed much of that.

It seems a mercy he has finally been allowed to pass.