A Terminal Illness Divides Parents And Doctors

Jul 15, 2017
Originally published on July 15, 2017 12:50 pm
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SCOTT SIMON, HOST:

What will happen with Charlie Gard, the 11-month-old little boy in a London hospital with a rare terminal illness, mitochondrial DNA depletion syndrome? He's been in the Great Ormond Street Hospital since last October and reportedly has no muscle function, cannot breathe on his own and seems to have no awareness. Doctors there say there are no remaining treatments that could save his life or improve it. They've recommended Charlie just receive end-of-life care. His parents have gone to court to ask permission to take their son to the United States to receive an experimental treatment in New York.

A judge has now given permission for a U.S. doctor who specializes in conditions like Charlie's to come to London and assess whether any further treatment would truly help him. We're joined now in our studios by Arina Grossu. She's director of the Center for Human Dignity at the Conservative Family Research Council. Thank you so much for coming in.

ARINA GROSSU: Thank you so much for having me, Scott.

SIMON: You feel strongly this is not just a medical decision, don't you?

GROSSU: It's not just a medical decision. This is a decision that has implications on parental authority versus the state. The family is pre-political, so they should be the ones to make the decision as to the kind of care that Charlie should get. And there are seven experts around the world who do see that he can be helped. And the hospital is not only saying, we won't offer the care that has helped other children with less severe forms, but they're saying, we won't even release Charlie so that others who can help him can have a chance at helping him.

SIMON: Are there instances in which the parents do not necessarily have the best interest of the child at heart and it is the responsibility of a hospital or the state to intervene?

GROSSU: Of course. And in terms of if the parents are deemed unfit to make decisions, if there's any sense of abuse, that is when the state or the courts can step in and really look out for the best interests of a child. But in this case, the parents obviously love their child and see that this therapy could help prolong his life and actually help slow down the rate of his illness. And so they're being denied that chance.

And, in fact, the - Article 8 of the European Convention on Human Rights says that parents should not be overcome by the government and suffer coercive state interference. And they are fit parents. And they should be able to make this decision, especially since they're looking out for Charlie's best interests.

SIMON: We should explain that money is not an issue. More than 80,000 people have donated to a fundraising campaign to support the Gard family. Why do you feel this case has drawn such, at this point, international attention?

GROSSU: I think it has sparked outrage because it gets down to the point of whose child is Charlie? Does Charlie belong to the state, or does Charlie belong to his parents? And if he belongs to his parents, then they should be given the right - and not the government, not the hospital, not the courts - to decide Charlie's fate because the moment they turn off the ventilator, he's going to die.

SIMON: Would a life spent on a ventilator be worth living?

GROSSU: From the Christian perspective, yes because every single human life is valuable. His life has meaning. And if his parents want to increase and prolong and give him the best chance possible, the hospital has no right to step in the role of the parents to try to give their son the best chance possible.

SIMON: Arina Grossu of the Center for Human Dignity, part of the conservative Family Research Council. Thank you so much for being with us.

GROSSU: Thank you so much for having me. Transcript provided by NPR, Copyright NPR.