Courts and parents at odds: Should dying British baby be brought to U.S. for help?

LONDON — Charlie Gard, who turns 11 months old Tuesday, was born with an extremely rare genetic disease. He is blind and deaf, and he cannot breathe or move on his own. He suffers from persistent epileptic seizures.

Now the British infant is at the center of a global debate, drawing in the Vatican and President Donald Trump, over what medical treatment, if any, he is entitled to receive, and who decides — his family, his doctors or the courts.


“These terrible decisions have to be made all the time,” said Jonathan Moreno, a professor of ethics at the University of Pennsylvania. “It is very unusual for a case like this to explode on the global stage. They raise difficult moral and ethical questions.”



The London hospital that is treating Charlie has asked permission to remove him from life support. His parents want to take him to the United States, where they believe an experimental treatment has a chance — however remote — of prolonging his life, even though the disease has no cure.

www.seattletimes.com...


A difficult topic. A sad topic for anyone who is a parent. I'll give my opinion right off the bat; If the parents want to move mountains to care for their child, then they should be able to do so. The government should be bending over backwards to follow the parents wishes.

But who knows more? The parents or the government?

It sickens me to think that a cold government can so casually dismiss a parents desires to do anything and everything for their child.

originally posted by: DBCowboy

LONDON — Charlie Gard, who turns 11 months old Tuesday, was born with an extremely rare genetic disease. He is blind and deaf, and he cannot breathe or move on his own. He suffers from persistent epileptic seizures.

Now the British infant is at the center of a global debate, drawing in the Vatican and President Donald Trump, over what medical treatment, if any, he is entitled to receive, and who decides — his family, his doctors or the courts.


“These terrible decisions have to be made all the time,” said Jonathan Moreno, a professor of ethics at the University of Pennsylvania. “It is very unusual for a case like this to explode on the global stage. They raise difficult moral and ethical questions.”



The London hospital that is treating Charlie has asked permission to remove him from life support. His parents want to take him to the United States, where they believe an experimental treatment has a chance — however remote — of prolonging his life, even though the disease has no cure.

www.seattletimes.com...


A difficult topic. A sad topic for anyone who is a parent. I'll give my opinion right off the bat; If the parents want to move mountains to care for their child, then they should be able to do so. The government should be bending over backwards to follow the parents wishes.

But who knows more? The parents or the government?

It sickens me to think that a cold government can so casually dismiss a parents desires to do anything and everything for their child.

It is sad and tragic...

On the one hand, i agree with the parents. If it was my child i would be hellbent to get my way and no one had better get between me and what i think is best for my child.

On the other, from what little i understand of the issue, there's not much hope for the child. Even being able to bring him to the us won't guarantee that the docs here can save him. If the gov were a person as opposed to an entity, i would say that they were trying to save the parents from spending unnecessary money and false hope. Since its an entity... why is it blocking the parents? What right do they have? The child isn't a ward of the state so imo the gov is taking responsibility and actions that are illegal.

What's wrong with governments today??

a reply to: DBCowboy

Thank you for this thread DB. This is an extremely tragic and sad event.

Here is my opinion. I don't think anyone other than the parents should have the right to say what have to happen to the baby.
This should be the parents decision exclusively.

On the other hand, while I understand this is very hard for them, they need to make a decision what is best for the baby not for them. Meaning if they think there is anything to do that would possibly offer a better life for that kid, then yes go ahead with any and every opportunity they might have. But if this is only for the parents then I don't know...

It is so hard even write about it

I think the saddest thing now is that since the government has pronounced the death sentence, they aren't even going to let the parents take the child home to die. Nope! He has to stay at the hospital and die there as if they are afraid the parents are somehow going to be able to take him and run to the US with him or something.

It's at that point that you start to think that this is less about the child's welfare and more about the state being right and owning him. It's not like hospice palliative care couldn't be done at home. The parents even have the money they raised to take him overseas that could be used for that much.

Considering how often medical opinions are wrong, I say # that.

If the parents want to, and can pay for it, that is their right.

I don't see how a medical facility can say, "sorry, we can't make your son better so we've decided to off him."

Sickening.

a reply to: DBCowboy

As a parent I can't imagine facing this, it makes my cancer pale in comparison. Yet I know at some point I will most likely say that I've suffered enough and it's time to let me go. This poor infant can't do that. He can't live off of life support so how does he get to the US?

originally posted by: scojak
Considering how often medical opinions are wrong, I say # that.

If the parents want to, and can pay for it, that is their right.

I don't see how a medical facility can say, "sorry, we can't make your son better so we've decided to off him."

Sickening.

You can when you realize that it's socialized health care.

We've been through all this nonsense on another thread.

TL;DR - the British Government is not involved, the parents are apparently mad with grief and planning actions that would harm their child with zero beneficial outcome, the medics involved are quite legally refusing to discharge a hospital patient into a harmful situation.

From what I've seen there really is no hope.
My heart bleeds for these poor parents. I don't think I could cope myself I'd be a wreck.
I totally understand them wanting to do all they can but doctors seem to feel the tiny lad is suffering and this would only prolong it.
What a crappy situation to be in.

originally posted by: Kali74
a reply to: DBCowboy

As a parent I can't imagine facing this, it makes my cancer pale in comparison. Yet I know at some point I will most likely say that I've suffered enough and it's time to let me go. This poor infant can't do that. He can't live off of life support so how does he get to the US?

The parents raised the money through donations to pay for the necessary medical transport to get him to the US, even the therapy there. The money was available and it wouldn't have been on the state's dime.

a reply to: Sillyolme

Do you think the doctors should be allowed to deny the parents the right to take their baby home to die?

Because they are.

a reply to: DBCowboy

Yep, bring him here. Obamacare will cure what ails him.

a reply to: ketsuko

My understanding is that they didn't raise enough for a life support system.

a reply to: AkontaDarkpaw

Let's try to keep in mind that the courts are not making this decision. They act on the advice and knowledge of the medical staff attending this little one.

They don't just decide.

It's horrible.
No parent should ever have to suffer the loss of a child.

This is certainly not an easy decision. I have been following some posts on Facebook from a couple who had a child they knew had many horrible birth defects. Their doctor recommended ending the pregnancy because this child wasn't expected to live very long and would be in agony. The parents refused abortion, so I kept seeing updates on all the many surgeries with all the painful recuperations. It broke my heart to see this poor child with all the tubes hooked up to him. In all the photos they posted of him, he was never smiling, nor did he look happy at all. He lived 13 months and never left the hospital.

Those parents kept him alive in agony those 13 months for them - not for him. It would have been so much more humane to have ended the pregnancy.

originally posted by: Sillyolme
a reply to: AkontaDarkpaw

Let's try to keep in mind that the courts are not making this decision. They act on the advice and knowledge of the medical staff attending this little one.

They don't just decide.

It's horrible.
No parent should ever have to suffer the loss of a child.

Again ... do you think the doctors should be allowed to tell the parents that they can't take their baby home to die? That he can't even receive palliative care at home and die there instead of at the hospital?

a reply to: kaylaluv

Who are you to determine someone else's value of life?

Until you are in that situation, you can't and shouldn't.

originally posted by: Kali74
Yet I know at some point I will most likely say that I've suffered enough and it's time to let me go.

What? no, eff that. not to get off topic but if there is a 1% chance for you to fight and win, then its all thats needed.
Suffered enough, pfft. You are suffering through a Trump presidency. You can topple cancer with that under your belt!


Back on topic: no win scenario. I have no strong opinion, only sorrow for such unfortunate situations still being part of society. its 2017, we were all meant to be immortal cyborgs by now! :

a reply to: szino9

What if the child were suffering?
I sure have no desire to vilify these poor people. God I would never. But what if the doctors are right and little Charlie is suffering?
I'd hate to be in this position.
As a mother I wouldn't want my child to suffer for a moment.
But I'd also want to keep hold of them for as long as I could.
There is no cure. That's the very worst part. In the end the outcome is the same. It's just a question of when.

a reply to: scojak

They're not wrong in this case. Everyone is in agreement on this. There is no cure there is only giving months or days to these parents. Sadly .