STEVE INSKEEP, HOST:
A British infant with a rare genetic disorder has made international headlines because his story touches a sensitive question, should parents be the ones who have the final say in treating critically ill children? Or should doctors? In the U.K., a law says that doctors can challenge parents if they're not acting in the best interests of the child. NPR's Joanna Kakissis reports from London.
JOANNA KAKISSIS, BYLINE: Charlie Gard is just 11 months old. He's suffering from mitochondrial depletion syndrome, which has left him brain damaged and unable to breathe on his own. His parents have raised money through crowdfunding to take Charlie to the U.S. for an experimental treatment. But his doctors have refused to discharge him. Speaking to the program "Good Morning Britain" earlier this month, his mother, Connie Yates, explained why she's challenging the doctors.
(SOUNDBITE OF TV SHOW, "GOOD MORNING BRITAIN")
CONNIE YATES: You know, he's our own flesh and blood. And we don't have a say in his life whatsoever. And, you know, we're not bad parents. And we're there for him all the time. Like, we're completely devoted to him.
KAKISSIS: Charlie's doctors at Great Ormond Street Hospital in London say they worry the experimental treatment, which has not even undergone clinical trials, could make the baby suffer. His condition is usually fatal, and there's no known cure. They say his life support should be shut off so he can die peacefully.
When parents do not agree with a doctor's decision, it goes to the courts.
RAANAN GILLON: And the court has to decide, on the basis of what's in the best interests of the child, what to do about it.
KAKISSIS: That's Raanan Gillon, an emeritus professor of medical ethics at Imperial College in London.
GILLON: So then the question is, is it sufficiently harmful here to keep the child alive that it would count, as it were, as child abuse so that the right of the parents to make these decisions should be withdrawn?
KAKISSIS: For example, he says, the courts have sided with doctors in the cases of parents who are Jehovah's Witnesses and refuse lifesaving blood transfusions for their children on religious grounds. But for one parent who watched her own child suffer from a fatal disease, Charlie's case is much harder to judge.
SACHA LANGTON-GILKS: You feel guilty if you don't do the treatment. Oh, my God - you know, they die. And you think, I should have done it. I didn't fight hard enough. I'm a terrible parent.
KAKISSIS: That's Sacha Langton-Gilks, speaking via Skype from her home in southwestern England. Her son David died of brain cancer at 16. He asked her to end treatment after it blistered his body and burned his throat, all while the cancer spread. But Charlie is too young to express what he wants, she says, leaving the decision to his parents.
LANGTON-GILKS: You're damned if you do, and you're damned if you don't. It's, you know, impossible.
(SOUNDBITE OF PROTEST)
UNIDENTIFIED PROTESTERS: (Chanting) The world is watching.
UNIDENTIFIED WOMAN: (Chanting) Save Charlie Gard.
UNIDENTIFIED PROTESTERS: (Chanting) Save Charlie Gard...
KAKISSIS: Charlie's case has resonated deeply. Supporters have protested at Buckingham Palace. Pope Francis and President Trump have both offered their help. Charlie's parents are pinning their last hopes on a neurologist from Columbia University in New York who has tried the experimental therapy on a few patients. He's flown to the U.K. to examine Charlie. Transcript provided by NPR, Copyright NPR.
