Baby Charlie Gard

I see this baby has died today. Poor little thing. Can someone help me understand this whole story? Why was the U.K. government allowed to decide on this child's care? Why weren't the parents allowed to bring him to the US even if the treatment wasn't likely to be helpful? And why did a court get to decide how and where he died? At first I thought the parents were fighting each other but that doesn't seem to be the case at all.

In Britain, when doctors and parents do not agree on sustaining or removing life support from an incurably ill child, the issue goes to court. Court's position (along with the London hospital) on the possible experimental treatment in U.S. wasn't that it "wasn't likely to be helpful" but that it absolutely would not have helped.

I don't know why the child wasn't allowed to be brought home to die, as the parents wanted. Very sad and complicated.

Thanks for the explanation. When the child death was imminent anyway, I don't see why it isn't up to the parents to decide on trying the experimental procedure. And the other part- they wanted their child home for a few days to be alone with him and let him die there. I can't imagine a possible reason the court could or should ever interfere with that. Tragedy on top of tragedy. So sad.

The explanation was that the trip and the treatment would cause unnecessary suffering to the child who was going to die anyway.

From what I gather the medical experts who had examined Charlie and had extensive knowledge of his condition stated that while he was unable to move, he was able to feel pain and that the parent's plan to try the experimental treatment would have caused him to suffer.  That was the main driver behind them not allowing them to try the experimental treatment.

My understanding is that the US doctor who was offering the experimental treatment withdrew his offer once he had a better understanding of the child's condition.

okay. 

What about the battle for hospice vs at home death then? 

From The Guardian:

"In the face of opposition from [the hospital], which said the invasive ventilation required by Charlie was not deliverable at home, they agreed with the hospital that he would be transferred to a hospice for his final hours.

But still the parties disagreed, with the family wanting to keep him alive for several days but the hospital saying that would require a 24/7 intensive care team, which was impossible to find for a hospice setting.

The judge, Mr Justice Francis, gave the parents time to find such a team but they were unsuccessful and he directed that an alternative plan should be put in place involving a much shorter time spent at the hospice on life support, the details of which were were not made public."

This may help answer some background questions. 

http://www.bbc.com/news/health...

conandrob240 said:

okay. 

What about the battle for hospice vs at home death then? 

pain management?