Charlie Gard

[SueEllen]

I would trust the courts in this matter. Just wanted to dismiss the idea that resource allocation should be a factor.

It is interesting that Great Ormond St was originally founded (Charles Dickens was one of the fund raisers) because nobody really bothered treating sick children, although there were already children's hospitals in Paris and Dublin. They just died. We have now moved to a position where children's services are typically the best funded and that is how it should be. I do wonder sometimes though about the heroic intervention (especially in the US) of babies born at 22 / 23 weeks gestation.

What happens when he is 18? What happens when he is 25?

One of the problems in the UK is that children receive the best care but if you are someone who needs life time help or get a condition when you are between 18-25 then depending what condition you have you can get feck all services.

It is also very easy for charities to raise money for babies and children but it is harder to raise money for teenagers and young adults, so one of the local charities I give money to targets this age group.

Then there is the position of parents. - What do they do when they die? if there are no other siblings, or relations who have a sense of duty then who fights to ensure he gets decent care?

[SueEllen]

It's that or death.

Give him the drug.

So if the drug makes him convulse in pain or cause him to have multiple organ failure they should give it to him?

[PurpleGorilla]

So if the drug makes him convulse in pain or cause him to have multiple organ failure they should give it to him?

Ooooh good question.

That's the risk of experimental treatment.

Even fully licensed drugs have their side effects and in extreme circumstances can result in death.

The good thing is that he is in the best environment he can be to be monitored in.

[northernladyuk]

Ooooh good question.

That's the risk of experimental treatment.

Even fully licensed drugs have their side effects and in extreme circumstances can result in death.

The good thing is that he is in the best environment he can be to be monitored in.

The benefits and risks of licensed medications are understood so an informed decision can be made. This drug has not been tested on mice yet.

[PurpleGorilla]

The benefits and risks of licensed medications are understood so an informed decision can be made. This drug has not been tested on mice yet.

Well it's either take it or die!

[Lost It]

Something that's been bugging me for a while. The poor kid has no chance. He's kept alive by machines. The condition he has isn't curable. Even his organs couldn't be used to help another child. So in the cold light of day, if it was anything other than a human the plug would have been pulled months ago.

And every photo I have seen of the so called "loving parents" has them looking into the camera all doe eyed.

If that was my child, so close to death, I would be trying to imprint the image of it into my brain. I wouldn't be posing for a camera.

Sorry. I've never been in that situation, not with a child, but sometimes it's the right thing to do. Morally, scientifically, if there is something that might be learned from the poor thing that might help others in the future then maybe there's an argument. But surely using humans as guinea pigs to test new theoretical procedures is ethically somewhere out there with breeding kids to have blond hair and blue eyes?

[Lost It]

Well it's either take it or die!

But the child isn't capable of taking it. It has to administered, there's no choice in the matter.

It will be take it and die anyway, it's just putting off the inevitable. That's why I refused to consider chemo in my case. If it's time to go, then it's time.

[SueEllen]

But the child isn't capable of taking it. It has to administered, there's no choice in the matter.

It will be take it and die anyway, it's just putting off the inevitable. That's why I refused to consider chemo in my case. If it's time to go, then it's time.

If you have dependents and/or can get a few more good years then you should have the chemo or whatever treatment to extend your life.

If however the treatment won't help you then you want palliative care.

[sasguru]

Provided there's no pain to the child (whether that's the case is not clear to me) they should try everything they can IMHO.
That's what I would do.

[vwdan]

Awful situation all round. I do feel a little emotionally close to this one - after discovering Williams heart defects we did have to have the "going forward" conversation at the post 24-week mark. And I must admit, the pics of Charlie on life support are a little uncomfortably close to my own pics. Obviously still a million miles apart from what they're going through, but I definitely discovered some emotions I didn't know I had and I witnessed some events that I could have done without tbh.

My take on it hasn't massively changed since day one:

Parents - nothing but up-most sympathy for them. I think they're wrong/misguided, but I completely get why they're doing what they're doing. I thoroughly believe for the most part they're being utterly taken advantage of by people willing to capitalise on their desperation and devotion to finding answers which simply do not exist.

UK Doctors & Courts - appear to be trying to make an honest and genuine medical case that it be best he left to die. Given that they're by far the experts and that the courts, having seen all the corresponding evidence, are upholding their view I find it very hard to argue against it.

GOSH - One of the best children's hospitals in the world and, on the assumption it's anything like Birmingham, filled with utterly dedicated staff. I'm pretty ****ed off that they're being dragged through the mud over this. Having the debate is one thing, but people slagging off the hospital can go **** themselves. If anyone thinks that the staff there aren't anything but utterly gutted about the situation then they simply haven't a clue. How anyone can work in PICU, I really have no idea to frank - one of our nurses did admit she was desperately going to get back to adult ICU, simply because because the downs in the ups & downs were just too much in paediatrics.

Charlie - a child, who is likely in pain. Not a lab experiment, not a test subject, but a very real child. Essentially non-existent chance of recovery.

US Doctors - appear to be doing little more than muddy the waters with unknown quantities. No proven medicine and, even if what they propose miraculously works, little chance of any real tangible improvement for Charlie. Already forced to admit that they were not aware of how severe his condition is.

The Pope, Trump etc - Need to settle the **** down. Scoring political and personal points based on the life and suffering of a child. Completely useless comments and, again, capitalising on someones suffering. I'm also not quite grasping this "playing God" and "killing" argument - the entire point is that we are artificially keeping him alive with technology. These arguments are not helpful and simply detract from the realities of the situation.

What I don't really have right now, is the answer. GOSH are in a seriously lose lose situation - nobody there is going to do this without the parents present and compliant. I suspect the hope was a quiet resignation on their parts and to then get it over with.

Now, even if we overlook the issues with the treatment (The fact he's now becoming a lab rat, unknown side effects etc) - what next? It isn't going to work, anyone with a clue knows this. So what next - let the next Doctor in line have a crack? Fly him to India and see a spirit man? Carry him up a mountain to see a monk?

There's no way the parents are going to let this go after trying to a round of drugs and I do sincerely believe there are fates worse than death. To my mind, the only reasonable and humane course of action is to let him die.