Understanding The Case Of Charlie Gard Eleven-month-old Charlie Gard was born with a rare genetic disorder. His parents' legal fight to continue his treatment has sparked a debate about who should decide what medical treatment he gets.

Understanding The Case Of Charlie Gard

Understanding The Case Of Charlie Gard

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Eleven-month-old Charlie Gard was born with a rare genetic disorder. His parents' legal fight to continue his treatment has sparked a debate about who should decide what medical treatment he gets.

Dr. Claire Fenton-Glynn, a legal scholar at the University of Cambridge who studies children's rights, talks to NPR's Kelly McEvers about the case.

KELLY MCEVERS, HOST:

If you're watching TV or looking at social media, you have probably seen pictures of Charlie Gard. He's an 11-month-old baby who was born in the U.K. In one picture, he's wrapped in a blanket. There's a stuffed monkey next to him and a breathing tube attached to his nose. Charlie Gard was born with a rare genetic disease that has left him with severe brain damage and unable to breathe without help. For nearly all his life, his parents have been fighting to continue his treatment and his life. British and European courts up the chain of appeals have said no. Here to talk about this case is Claire Fenton-Glynn. She's a law lecturer at the University of Cambridge in the U.K., where she focuses on children's rights and family law. Welcome to the show.

CLAIRE FENTON-GLYNN: Thank you.

MCEVERS: I think this is something that would be so hard for Americans to hear, that a hospital decided not to continue Charlie's treatment. Why did they decide that?

FENTON-GLYNN: It wasn't so much not to end his treatment. It was that in this case, they decided that any further proposed treatment would be futile and provide no ongoing benefit for Charlie. So they decided that it would be in Charlie's best interests to be allowed to die with dignity.

MCEVERS: And now Charlie's parents are hoping to bring him to the United States for experimental treatment. They've raised around $1.7 million. The courts are also preventing them from doing that. Do they have any other options at this point?

FENTON-GLYNN: So the application before the court was on this very question whether to permit the parents to take Charlie to the United States. I suppose one thing that's important to say was that if it were the case that they believe that this treatment would be best for Charlie, they would have gone ahead with it in this country. I suppose the other thing in this respect was that although the treatment may be described as experimental, this treatment hadn't even reached that stage, that it has never been tried on mice, let alone humans. So the court in this case said that the possibilities of success of such a treatment were so futile that it would be close to zero.

MCEVERS: And that really points to a kind of fundamental difference in how the United States and, say, Europeans think about the role of parents in these cases. How would you describe that difference?

FENTON-GLYNN: Yeah, absolutely. I mean, under English law, we don't talk about parental rights. We talk about parental responsibility. We don't say that a parent has a right to make a decision for their child, particularly in the cases of medical treatment. So if there is a dispute between the doctors and the parents as to what should be done, the option and always best practice is to go before the court. And then the court has to decide what is in the child's best interest. And in doing so, it doesn't start with the presumption that the parents are right.

MCEVERS: Do you think this case could inspire some people to rethink the idea of parental rights in the U.K.?

FENTON-GLYNN: I think what it's really shown is there does seem to be a public perception that parents should be able to make decisions for their children. However, from a legal perspective, this is not a surprising legal decision. And I think this has really brought to public attention the idea of, you know, how do we decide what is in a child's best interests? People are starting to talk about, you know, is it this ever in the child's best interest to simply let a child die? So take them off an artificial ventilation. So I think that has been an important discussion in this country.

MCEVERS: Claire Fenton-Glynn of the University of Cambridge. Thank you very much.

FENTON-GLYNN: Thank you.

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