The Charlie Gard case

[Pea-n-Me]

I am still learning about this myself. But wondered what peoples' thoughts are.


- Starting with this, an overview of the case:

https://en.m.wikipedia.org/wiki/Charlie_Gard_case



- And most recently:

http://www.standard.co.uk/news/uk/c...l-cant-be-removed-from-hospital-a3591456.html



- ETA What is Nucleoside Therapy? (For MDDS, or Mitochondrial DNA Depletion Syndrome)

https://mitochondrialdiseasenews.co...ned-why-doctors-debate-treating-charlie-gard/

 

[pryncess527]

I'm not sure how US citizenship helps if he doesn't have a health care policy that covers treatment in the US.

 

[sunshinehighway]

I have great sympathy for the parent. I can't even imagine how difficult it all is good them. I don't think we should get involved. I think there's a lot of hypocrisy in our country inserting ourselves in this situation.
It's always unfortunate when loved ones have a difficult reality to face and are unable to do so.

 

[NHdisneylover]

It reminds me a bit of the Jahi McMath case. Parents, struggling to come to terms with the worst possible news abotu a child, clutching at false hpoe provided by a couple of random doctors in spite of multiple, more involved doctors all reaching the same conclusions.

I cannot imagine the horrible agony of knowing you will lose a child and nothing can really be done for them. My heart breaks for the parents and the medical providers who are trying to do right by the child in this.

I find it odd and overreach that our government is involved in any way--and particularly to provide permanent residency to teh child and his family with apparently little to no vetting, etc. Do the parents still get that if/when the child dies? Would we do this for a dying refugee child from a mid east nation? I am uncomfortable with that overreach.

 

[DizBelle]

I'm not sure how US citizenship helps if he doesn't have a health care policy that covers treatment in the US.

They did a gofundme that raised 1.3 million pounds. It doesn't matter what health care policy they have or don't have. Whoever is going to provide treatment and the Gards are free to negotiate how much to pay.

I think the green card would help in that the Gards could come here and not have to go through the machinations of leaving the country and coming back which is required when "just visiting". If they have green cards, they can just stay.

 

[DizBelle]

In my opinion, it seems cruel to prolong this child's suffering. Realistically, what kind of life can they expect for him should any of these treatments do anything for him?

 

[rastahomie]

The child belongs to his or her parents, not to a government bureaucracy. The UK government has zero right, morally, to prohibit the family from seeking treatment in the US (if that's what they're doing; I'm still unclear on that point).

That the USA offered them a chance to come here for treatment is commendable. HOWEVER - and I will try say this as delicately as possible to avoid become too political - I'm not convinced that the man who made the offer did so for the right reasons. Nevertheless, regardless of the political hay being made of this, if the parents want to come here for treatment, and are able to pay for it, it's nobody else's business.

 

[NHdisneylover]

The child belongs to his or her parents, not to a government bureaucracy. The UK government has zero right, morally, to prohibit the family from seeking treatment in the US (if that's what they're doing; I'm still unclear on that point).

That the USA offered them a chance to come here for treatment is commendable. HOWEVER - and I will try say this as delicately as possible to avoid become too political - I'm not convinced that the man who made the offer did so for the right reasons. Nevertheless, regardless of the political hay being made of this, if the parents want to come here for treatment, and are able to pay for it, it's nobody else's business.

Hmmm, I have never thought of children (mine or not) as belongings.
Yes, generally speaking, since someone has to make decisions for minors, it makes that parents do so and do what they feel is in the best interest of their child. Mostly beucase most of the time most parents want what is best and are able to make good decisions.
But governments can and do make decisions to override parents on a regular basis. Parents who abuse their children, or neglect them by failing to educate them or feed htem or provide medical care, etc lose the option to make that decison and instead the government steps in to protect the interests of the child, as a PERSON not a piece of property belonging to the parent.

 

[wilkeliza]

I have so much compassion for the parents and to Charlie himself. With that said it is time to let their little boy go. He has a mitochondrial disorder and has progressed far beyond being saved by the medicine. The other little boy with the same disorder that was helped did not have the worst kind like little Charlie and had not progressed nearly as far. I have to imagine if the UK doctors had even a glimmer of hope that Charlie could have some sort of life with this treatment they would let him have it. The fact the human rights court as well as several other higher courts have said there is nothing they see that can be done speaks a lot to me.

In cases like this the courts are involved because the government is paying. I imagine if they went to a private hospital and had paid for private care, private transport, private facility they could have done what they wanted but they couldn't do that. A this time even it appears they still aren't giving any of the money they raised to a doctor in the UK who may be willing to take over his care. They just want approval to send him to the US. It sounds like if he is off his ventilator for even a brief moment he'll die. So even if they did get him moved it would have to be with a lot of logistical work. I can't imagine what a private ICU medical transport including a private life support system would cost but I bet the million they raised isn't nearly enough.

 

[NHdisneylover]

I have so much compassion for the parents and to Charlie himself. With that said it is time to let their little boy go. He has a mitochondrial disorder and has progressed far beyond being saved by the medicine. The other little boy with the same disorder that was helped did not have the worst kind like little Charlie and had not progressed nearly as far. I have to imagine if the UK doctors had even a glimmer of hope that Charlie could have some sort of life with this treatment they would let him have it. The fact the human rights court as well as several other higher courts have said there is nothing they see that can be done speaks a lot to me.

In cases like this the courts are involved because the government is paying. I imagine if they went to a private hospital and had paid for private care, private transport, private facility they could have done what they wanted but they couldn't do that. A this time even it appears they still aren't giving any of the money they raised to a doctor in the UK who may be willing to take over his care. They just want approval to send him to the US. It sounds like if he is off his ventilator for even a brief moment he'll die. So even if they did get him moved it would have to be with a lot of logistical work. I can't imagine what a private ICU medical transport including a private life support system would cost but I bet the million they raised isn't nearly enough.

Hmmm, I have a differing understanding of why the courts are involved. I had thought they were intervening for the welfare of the child---essentially saying that trasnporting the baby overseas and trying this experimental treatment on him with no reasonable hope of success would subject him to unneccesary phyisical pain and trauma. But I have not followed the case at all closely so you may well be correct.

 

[wilkeliza]

Hmmm, I have a differing understanding of why the courts are involved. I had thought they were intervening for the welfare of the child---essentially saying that trasnporting the baby overseas and trying this experimental treatment on him with no reasonable hope of success would subject him to unneccesary phyisical pain and trauma. But I have not followed the case at all closely so you may well be correct.

They were involved before transporting him was even an option. The doctors at the UK hospital determined that continuing to treat Charlie was inhumane and that it was time to shut off his life support. I believe the parents refused and had to sue to save him. They started reaching out to find a cure or have him move once his UK team said there was nothing more they could do and it was time to let him go. Of course it isn't just the money but I imagine if you are paying private doctor and facility they'll keep the life support on as long as you are willing to pay (thus Jahi's case). Not saying this is the doctors giving a death sentence because the money is dry I seriously think if Charlie had any chance they would let him be transported or even try giving him the medicine in the UK but there is just no chance with the disorder he has.

I just think about the facts of my mother's cancer. Yes at a point the doctors had to say sorry there is nothing more we can do. Had we been able to pay out of pocket and in full there were other things they could have tried (including an experimental drug that she was approved for but we couldn't pay for) but at some point there is a point of no return. Once your brain is gone (or significantly damaged) there is not much hope for return and it would have been unethical for a doctor to continue to give hope and take money when the end result would have been the same. At the end of the day I think this little boy has reached that point and a doctor who hasn't even seen him in person for more then 5 hours giving the family hope is unethical to me.

 

[rastahomie]

But governments can and do make decisions to override parents on a regular basis. Parents who abuse their children, or neglect them by failing to educate them or feed htem or provide medical care, etc lose the option to make that decison and instead the government steps in to protect the interests of the child, as a PERSON not a piece of property belonging to the parent.

Oh I absolutely agree! But is forbidding parents from seeking medical treatment in another country abuse? Especially considering that his own country is prepared to let him die? No, the Gards are not being abusive or neglectful. They're being a bit silly, yes. But being silly doesn't make you a bad parent.

 

[NHdisneylover]

Oh I absolutely agree! But is forbidding parents from seeking medical treatment in another country abuse? Especially considering that his own country is prepared to let him die? No, the Gards are not being abusive or neglectful. They're being a bit silly, yes. But being silly doesn't make you a bad parent.

well, if multiple doctors say the pain caused him by transport is inhumane and that he will not live even with said treatment, perhaps yes---allowing the parents to move the child might be abuse. Causing lots of physical pain to satisfy the parents desires to try every last option. I mean, I don't know enough about the case to have a feeling one way or the other if this is really the cases here or not, but i can see where an argument could legitemately be made

 

[wilkeliza]

Oh I absolutely agree! But is forbidding parents from seeking medical treatment in another country abuse? Especially considering that his own country is prepared to let him die? No, the Gards are not being abusive or neglectful. They're being a bit silly, yes. But being silly doesn't make you a bad parent.

Do you feel the same way about court decisions where children are forced to go through treatment? There was a big case not to long ago about a child who had a very curable form of leukemia. Her parents refused to let her be treated with modern medicine and the courts got involved. If you believe parents should be able to try every last resort no matter the cost or the pain they are causing the child do you also believe a parent should be able to make the choice not to treat?

 

[rastahomie]

Do you feel the same way about court decisions where children are forced to go through treatment? There was a big case not to long ago about a child who had a very curable form of leukemia. Her parents refused to let her be treated with modern medicine and the courts got involved. If you believe parents should be able to try every last resort no matter the cost or the pain they are causing the child do you also believe a parent should be able to make the choice not to treat?

On this point I'm not sure, to be honest. I think there's a fine line between neglect and respecting a parent's deeply-held beliefs, especially when it comes to religious beliefs. For example, say a simple blood transfusion would save a child's life, but the parents steadfastly refuse because their religion forbids it. Should the courts step in and force the parents to allow the child to undergo the treatment? To do so violates their First Amendment rights to freedom of religion, but to not do so violates the child's right to life.

It's a tricky business, to be sure.

 

[Pea-n-Me]

Good discussion.

This addresses some of the concerns you've brought up from an ethico-legal standpoint, insofar as the differences between the U.S. and England in these matters.

https://www.statnews.com/2017/07/13/charlie-gard-life-support-ethics/

 

[sunshinehighway]

Oh I absolutely agree! But is forbidding parents from seeking medical treatment in another country abuse? Especially considering that his own country is prepared to let him die? No, the Gards are not being abusive or neglectful. They're being a bit silly, yes. But being silly doesn't make you a bad parent.

There comes a point where trying everything possible is abuse. It's more than just then being a bit silly. The fact that you describe it that way gives me the impression that you don't quite understand that there's no hope and continuing with trying to save him will be nothing but pain for him.

 

[wilkeliza]

On this point I'm not sure, to be honest. I think there's a fine line between neglect and respecting a parent's deeply-held beliefs, especially when it comes to religious beliefs. For example, say a simple blood transfusion would save a child's life, but the parents steadfastly refuse because their religion forbids it. Should the courts step in and force the parents to allow the child to undergo the treatment? To do so violates their First Amendment rights to freedom of religion, but to not do so violates the child's right to life.

It's a tricky business, to be sure.

At least you understand that both ways can be tricky. With holding care or continuing care is not always what is best for the individual and sometimes the court needs to get involved. I guess I also take to heart the whole thing that your first amendment right stops the moment it hurts another individual.

 

[Pea-n-Me]

I have great sympathy for the parent. I can't even imagine how difficult it all is good them. I don't think we should get involved. I think there's a lot of hypocrisy in our country inserting ourselves in this situation.
It's always unfortunate when loved ones have a difficult reality to face and are unable to do so.

I don't disagree, necessarily. I was surprised to see, though, that the House Committee on Appropriations voted unanimously to pass an amendment that grants the family residency according to this:

http://www.cnn.com/2017/07/19/health/charlie-gard-us-residency/index.html

Committee Members (for others who are curious):

https://appropriations.house.gov/about/members/

I think the timing is bad for this. But not sure when a good time would be, really.

 

[adisneyaunt]

Hmmm, I have never thought of children (mine or not) as belongings.
Yes, generally speaking, since someone has to make decisions for minors, it makes that parents do so and do what they feel is in the best interest of their child. Mostly beucase most of the time most parents want what is best and are able to make good decisions.
But governments can and do make decisions to override parents on a regular basis. Parents who abuse their children, or neglect them by failing to educate them or feed htem or provide medical care, etc lose the option to make that decison and instead the government steps in to protect the interests of the child, as a PERSON not a piece of property belonging to the parent.

However in this case there is no neglect, abuse, or failure.
Just a beuracracy that does not wish to be financially responsible for this child.
Govt has the right to decide what is/isn't right for the child in this case.

The parents of this child have tried from the beginning... even with financial funding, to Try Every means out there.

Instead they have been mired down in court cases...and this child waits... it's all about money.
i find it reprehensible and it scares me that Big Govt controls it all.
Mos. later... and all this time has passed, time where those that were willing and able and offered to try to offer a different approach... have been denied.