OT: Charlie Gard

[sidders]

We're not quite into the season yet so is it okay to still do some OT's? I wondered what Notts fans made of the case of Charlie Gard. This is a child who, if he survives, will never walk, talk or feed independently. Without life support, he would slip away.
A 'revolutionary' treatment is said to be available in the US but, if successful it cannot restore those faculties that would make Charlie a sentient being. Trying to look at the case as if you were the parent doesn't make it any easier. His parents say they wouldn't stay by his bedside and maintain his life if they thought he was suffering, but his doctors say that it is likely that he can and does feel pain.
Then there is the money - cost to the state via NHS and legal fees. However, there is obviously massive support in the country which has enabled his parents to amass over a million pounds for treatment in the US.
This is a moral dilemma for our times.

[Iwantmypieback]

It a very tough situation to be in. I think the underlying question is, who has authority over the welfare of a child? Charlie's parents aren't unstable, they are fighting like any other parent would for their child. They want to take him to a well known and licenced institution that can offer some potential hope for their child. If it was the case of them going to some medical backwater then I'd agree with GOSH's stance, but it's the US that has high levels of medical regulations and expertise. I think GOSH should advise them of their concerns but then allow Charlie to get the treatment. Going to court smacks of authoritarianism going too far.

Experts can get it wrong! For instance, had the parents of the boy in Southampton followed the law, their son would be dead, they sneaked him out of the country and he is now thankfully in remission due to the proton therapy that "wouldn't do anything". It's a difficult decision but in my opinion, there is no harm in allowing the treatment, it may not work on Charlie, but what is learnt could be used to treat the next little boy or girl with a similar condition

[SmiffyPie]

As the parent a very difficult choice. I would have been inclined to follow the advice given by the experts here tempered with advice from those offering the alternative therapy concerning the possible outcome and future well-being of the child. I haven't looked (because it has become something of a media frenzy) but as sidders suggests would the child have any meaningful life afterwards and for how long?
As for state interference; If the state disagrees with the suggested alternative treatment then I would suggest, after due diligence, they have a right to refuse funding. Have they a right to take the child into it's protection? Well yes they have I suppose (there are some strange people out there with strange ideas) but, as in this case, if an alternative treatment is being offered by trusted people and appears ethical then the state should quietly step back and allow the parents to make the call.

[queenslandpie]

As the parent a very difficult choice. I would have been inclined to follow the advice given by the experts here tempered with advice from those offering the alternative therapy concerning the possible outcome and future well-being of the child. I haven't looked (because it has become something of a media frenzy) but as sidders suggests would the child have any meaningful life afterwards and for how long?
As for state interference; If the state disagrees with the suggested alternative treatment then I would suggest, after due diligence, they have a right to refuse funding. Have they a right to take the child into it's protection? Well yes they have I suppose (there are some strange people out there with strange ideas) but, as in this case, if an alternative treatment is being offered by trusted people and appears ethical then the state should quietly step back and allow the parents to make the call.

For me the money is irrelevant but the quality of life isn't. It comes down to quality of life. It's extremely unlikely there would be any but to ask a parent to pull the pin on their child is asking the impossible. Sometimes it's not possible to make a correct decision. Just ask Ray Trew or Alan Hardy!

[seriouspie]

We're not quite into the season yet so is it okay to still do some OT's? I wondered what Notts fans made of the case of Charlie Gard. This is a child who, if he survives, will never walk, talk or feed independently. Without life support, he would slip away.
A 'revolutionary' treatment is said to be available in the US but, if successful it cannot restore those faculties that would make Charlie a sentient being. Trying to look at the case as if you were the parent doesn't make it any easier. His parents say they wouldn't stay by his bedside and maintain his life if they thought he was suffering, but his doctors say that it is likely that he can and does feel pain.
Then there is the money - cost to the state via NHS and legal fees. However, there is obviously massive support in the country which has enabled his parents to amass over a million pounds for treatment in the US.
This is a moral dilemma for our times.

I may be wrong but thought the specialist medics were flying over here to perform the procedure.

[Vladpie]

The law, considers the welfare of the child over and above everything else in a case like this. It's their opinion that he'd suffer unnecessarily with no real prospect of recovery of any meaningful kind, an awful case and you feel for the parents.

What life could this child have, will never speak, see, hear, move, would anyone want to live this hell?

[Steward]

My opinion is that they should do the decent thing for Charlie and let go, as hard as it is, are they fighting for Charlie or themselves.

[Vladpie]

My opinion is that they should do the decent thing for Charlie and let go, as hard as it is, are they fighting for Charlie or themselves.

That's pretty much my opinion, different when it's your own though.

[sidders]

I may be wrong but thought the specialist medics were flying over here to perform the procedure.

You are wrong, Serious. If permission is granted, he flies to a hospital in the US.

[Vladpie]

They just said that although his body is growing physically due to being fed, his head isn't growing due to his brain not developing, truly tragic for this family but I really think they have to let him go.

[SmiffyPie]

As difficult as it may be, and God forbid anyone I know or care for is in this situation, the parents really should let nature take it's course.

[seriouspie]

You are wrong, Serious. If permission is granted, he flies to a hospital in the US.

Thanks Sid - I was misinformed.

[Vladpie]

Y'ou are wrong, Serious. If permission is granted, he flies to a hospital in the US.'


Or Italy

[AltyPie]

As I sit here thinking about this story, I genuinely have a lump in my throat. Sometimes life presents completely innocent people such as these parents with indescribably tragic dilemmas and one can only feel the maximum possible sympathy for them.

The only slight parallel I could possibly draw any empathy from (having considered it myself) would be that of a dying parent. As one who saw my father's quality of life deteriorate almost back to that of being as dependent on others as a small baby due to Alzheimer's (which can be an utterly awful illness), myself and my family were beginning to discuss the question of when should family assist their loved ones to die. In the end, nature saved us having to answer the question. There is simply no absolute answer to such questions. Charlie's parents, faced with a child who would lack the ability to experience so much of what we call "quality" in life (and potentially suffering as well) would have to wrestle with the question of when is it the loving thing to end someone's life you love.

[Steward]

I've been through something similar. I was born with a rare bowel disease (Hirschsprungs). They didn't know about it, my parents were told to get me baptised as they didnt expect me to live very long. I was in hospital from 6 weeks old till my 5th birthday. And still having operations till 2012 for same thing. they wanted to do the same thing to me, and stop the treatment, but the courts weren't involved then thank god. Hope they dont let the poor little chap linger on.

[SolSigns]

I've been through something similar. I was born with a rare bowel disease (Hirschsprungs). They didn't know about it, my parents were told to get me baptised as they didnt expect me to live very long. I was in hospital from 6 weeks old till my 5th birthday. And still having operations till 2012 for same thing. they wanted to do the same thing to me, and stop the treatment, but the courts weren't involved then thank god. Hope they dont let the poor little chap linger on.

That sounds horrible, mate. Hope you're over the worst.

My brother had a bone disease, followed by broken bones, and was in QMC for about 5 years from age 7 or so - then in a wheelchair for a year after + all the time in different casts. It was hell for him I'm sure, but he's one of those that never stopped getting on with life and finding bright sides. Even now when he has to deal with bad arthritis, he's all about his wife and kids. I was lucky, and I still choose to get p'd off with small things and argue on the internet. Perspective.


Sometimes life presents completely innocent people such as these parents with indescribably tragic dilemmas and one can only feel the maximum possible sympathy for them.

Well put, completely agree.

[sidders]

As I sit here thinking about this story, I genuinely have a lump in my throat. Sometimes life presents completely innocent people such as these parents with indescribably tragic dilemmas and one can only feel the maximum possible sympathy for them.

The only slight parallel I could possibly draw any empathy from (having considered it myself) would be that of a dying parent. As one who saw my father's quality of life deteriorate almost back to that of being as dependent on others as a small baby due to Alzheimer's (which can be an utterly awful illness), myself and my family were beginning to discuss the question of when should family assist their loved ones to die. In the end, nature saved us having to answer the question. There is simply no absolute answer to such questions. Charlie's parents, faced with a child who would lack the ability to experience so much of what we call "quality" in life (and potentially suffering as well) would have to wrestle with the question of when is it the loving thing to end someone's life you love.

Excellent post, Alty. Been there. This is why, when people are still compos mentis, they need to tell friends and family what their feelings are about continuing their lives if anything awful should occur like Alzheimer's or being reduced to near-vegetable status.

Thrombolysis, applied after a severe stroke, has something like a 1 in 20 chance of bringing about brain death. My wife knew I would want to take the chance (I was in a coma at the time).
The Charlie Gard case touches on so many different human dilemmas

[jackal2]

They just said that although his body is growing physically due to being fed, his head isn't growing due to his brain not developing, truly tragic for this family but I really think they have to let him go.

I agree with Vlad that letting nature take its course would probably be the best course of action for his parents, but in the last word lies the key. If this is a free country, the choice should lie with the parents, not with a Court.

The only time I condone a Court getting involved in a child's welfare is where there is suspicion of deliberate and wilful mistreatment by the parents or guardians. That is definitely not the case here. The parents want to fight for their child's life until literally all hope is gone, and how long that fight should last is matter of subjective judgement. Doctors (and Courts) are perfectly entitled to advise, in the strongest possible terms if they feel necessary, but not to impose their view.

[sidders]

What a shame that the parents spoiled the dignity of their final statement with an implication that their son could have been a normal boy if only the hospital had acted sooner. This is simply not true and only encourages the base trolls who know nothing to once more attack the medical professionals who have done nothing wrong.

[Trickytreesreds]

What a shame that the parents spoiled the dignity of their final statement with an implication that their son could have been a normal boy if only the hospital had acted sooner. This is simply not true and only encourages the base trolls who know nothing to once more attack the medical professionals who have done nothing wrong.

I think it is just anger/grief and the need to lash out Sid.
Tragic situation who I am sure anyone with half an ounce of decency, would never want themselves in.

As a comparison( no where near as awful), I can understand the comment made. The medical profession failed myself, by failing to diagnose for 2 years.
It could have cost me my life as well. 5 operations, of absolute misery spared me that.
So I get the point they are probably trying to make, the NHS is not the all giving wonder society, that is projected.
It does, make the wrong decisions.

[dam617]

What a shame that the parents spoiled the dignity of their final statement with an implication that their son could have been a normal boy if only the hospital had acted sooner. This is simply not true and only encourages the base trolls who know nothing to once more attack the medical professionals who have done nothing wrong.
Thank you, doctor - just itching for the 'I told you so'.
I don't mind saying I find it despicable that your opening post mentions a 'cost to the state' in keeping a baby boy alive.
Still, I suppose this frees up some extra cash for dozy bints desperate for a 'thigh gap' to have their genitals trimmed.

[sidders]

Thank you, doctor - just itching for the 'I told you so'.
I don't mind saying I find it despicable that your opening post mentions a 'cost to the state' in keeping a baby boy alive.
Still, I suppose this frees up some extra cash for dozy bints desperate for a 'thigh gap' to have their genitals trimmed.

My mention of 'cost to the state' was simply a statement of fact to which I attached no negative spin. Keeping him alive thus far has cost the state a lot of money. Fact. I may consider it money well spent. I certainly would if he was my child.
Your comparison with possible surgery for women is vile and of your own choosing. You must be a Mail reader. If not, may I recommend it to you?

[JoePass]

My mention of 'cost to the state' was simply a statement of fact to which I attached no negative spin. Keeping him alive thus far has cost the state a lot of money. Fact. I may consider it money well spent. I certainly would if he was my child.
Your comparison with possible surgery for women is vile and of your own choosing. You must be a Mail reader. If not, may I recommend it to you?



The Mail is very good, oh...how much is the Guardian losing each month....

[Old_pie]

Whilst a desperately sad situation this is really becoming too much of a circus and seems to be more about a battle of wills of what the parents want rather than what is best for a doomed little child.

Spend a little less time and energy in the courts and a little more time with the kid is my advice. Don't go looking for someone to blame - sh!t happens, it's nature.

[Steward]

Now the parents are fighting to take him home to die, and so it goes on.