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British Baby On Life Support Sparks International Debate

RACHEL MARTIN, HOST:

An 11-month-old baby is fighting for his life in a London hospital. His name is Charlie Gard. And he was born with a rare genetic condition that left him with severe brain damage and now on life support. This week, a British court will decide whether to take the baby off of that life support. The case has sparked huge global debate. Leaders from around the world have weighed in, including the pope and President Trump. Mary Dejevsky is a writer for the British newspaper the Independent and she joins us now on Skype. Mary, how is it that this baby - Charlie Gard's fate - is going to be decided by a court and not his parents?

MARY DEJEVSKY: It's because in Britain, there is a law called the Children Act, which was passed in 1989, updated in 2004, which provides that in these sort of cases, the welfare of the child has to be considered. And the welfare of the child is considered paramount. And this was the judgment made in this case. It's been right through the British courts, right from the lower courts up to the Supreme Court. It's been to the European Court. And all of those courts decided that the interests of this child rested in him remaining in Britain, not traveling for any sort of treatment and being taken off life support. And it's just gone back to the court.

MARTIN: We should just say that that's what the parents want to do. They want to take their child to the U.S. for this experimental treatment. But it's interesting, Mary, implicit in that is that the parents don't have the welfare of their child at heart. I mean, that's what this legal battle implies.

DEJEVSKY: Yes, it does imply that because there's a huge clash here between the parents, who want what they see as this last desperate chance for their child. And they realize, you know, that it's a huge gamble, that it may not pay off. But they've raised the money to do it, and that's what they want to do. But the hospital, the doctors, the sort of world-level specialists at what is a state-of-the-art hospital in London - Great Ormond Street - their judgment is quite different. They say, no, there's absolutely no point in doing this. It will simply create more suffering for the child.

And so this disagreement has been taken to the court. And it's the courts where it's the interests of the child which is seen is paramount. And, you know, a lot of people have misgivings about this. I know for an American audience, it will sound extraordinary that the parents who clearly want what they see as the best for the child won't necessarily have the last word here.

MARTIN: So where do things stand? I mean, this is - this has another step. Another court is going to make another decision. What has to be demonstrated here?

DEJEVSKY: Yes. It's being taken back to the courts extraordinarily because it all appeared to be over last week. And then suddenly, it appeared that Great Ormond Street at the hospital, the - some of the specialists there thought that there was new evidence that warranted going back to the court. So it's all been back in the court this week. It goes back for - it was adjourned today, goes back on Thursday. Not clear what judgment will be. But, of course, this could precipitate a new round of going back to the European Court. So we simply don't know.

MARTIN: And all the while, this child sits in the hospital on life support, a heartbreaking story. Mary Dejevsky of the Independent newspaper has been following it. Thank you so much for sharing your reporting this morning.

DEJEVSKY: Thank you. Transcript provided by NPR, Copyright NPR.