(I’m honored to introduce today’s guest author: JD Flynn. He is a husband, a father, a canon lawyer, and a great friend.)
In the middle of the night, when she was just six days old, our daughter Pia went into cardiac arrest. Twice. Pia was in the hospital already, and so doctors and nurses rushed into the room and saved her life. Twice. It was terrifying, and we were powerless. Pia is alive because of the Providence of God, and the medical care she received.
There are, doubtlessly, some people who might have asked if saving Pia’s life was the right thing to do. Pia has trisomy-21, the chromosomal defect known as Down syndrome. And the day before her heart stopped pumping blood, Pia had been diagnosed with a rare and untreatable kind of cancer. We didn’t know whether it would run its course, develop into something worse, or end her life. We accepted this prognosis, and we knew that her diagnosis would lead to suffering.
There are, I’m sure, some people who might have thought that a disabled girl facing a battle with cancer would have no meaningful, worthwhile, or comfortable life. People with Down syndrome are aborted at staggeringly high rates, in part because of a false compassion that believes their sometimes-difficult lives are not worth living. Three years ago, some ethicists began suggesting that aborting children with Down syndrome is a morally virtuous—and ethically normative—thing to do. And the euthanasia of sick and suffering children—children facing battles like cancer—is also becoming acceptable in many parts of the world.
I shudder to think it, but there are doubtlessly people who thought that a sick and disabled little girl, like our daughter, would have been better off dying that night. That her suffering wasn’t worth it.
But doctors saved Pia’s life anyway, because saving lives is what medicine is all about. Pia has Medicaid: the government paid for her treatment because supporting families in need is what government is supposed to be about.
Today she’s four. She has endured a lot of suffering. But she is also the most joyful person I’ve ever met. And we, Pia’s parents, don’t see “Down syndrome” when we look at her. We don’t see “cancer.” We see our daughter. We see a person, not a calculation. We can’t help that: we’re her parents. We would have done anything possible to make sure she lived through that terrible night.
Charlie Gard’s situation is not the same as Pia’s. Charlie Gard will almost certainly die, and soon. But I can imagine what his parents might be feeling right now. They don’t see Charlie as a media sensation, the center of an international debate over human and family rights. They don’t see him as a tragic medical phenomenon. They don’t see him as the sum of a dispassionate calculation of suffering, usefulness, and “quality of life.”
Charlie Gard’s parents see their little boy. They see his mother’s nose, and his father’s eyes. They see a baby they just love to be with. They see, maybe, a gift from God. And they’re hoping that someone—some doctor or scientist– will rush into the room, and save Charlie’s life. They’re willing to do anything—to go the ends of the earth—to try to help their little boy.
The treatment Charlie’s parents hoped to try had very little chance of success. But they wanted to try. Not to become culture-warriors or advocates for parental rights. Just to save their little boy.
The court did not support Charlie’s parents because, in the words of Charlie Camosy, they “do not think Charlie’s life is a benefit to him. They think it is in his best interest to die.”
Charlie Gard’s parents are not allowed to try, because powerful people think that the life of a seriously disabled boy is not worth living.
Pope St. John Paul II wrote that the culture of death is “a war of the powerful against the weak: a life which would require greater acceptance, love and care is considered useless, or held to be an intolerable burden, and is therefore rejected in one way or another. A person who, because of illness, handicap or, more simply, just by existing, compromises the well-being or life-style of those who are more favored tends to be looked upon as an enemy to be resisted or eliminated. In this way a kind of ‘conspiracy against life.’ is unleashed. This conspiracy involves not only individuals in their personal, family or group relationships, but goes far beyond, to the point of damaging and distorting, at the international level, relations between peoples and States.”
Charlie Gard is the victim of a “conspiracy against life.”
Doctors, governments, and courts which can look at parents like Charlie’s, and judge that they must give up the fight—that dying is in the best interests of their suffering little boy—have lost their humanity. They’ve forgotten, or rejected, that even difficult lives are gifts worth protecting, supporting, and saving. A case like Charlie’s reveals the inhumanity, the callousness, and the dictatorship of the culture of death.
Charlie Gard will likely die soon, and we’ll move on to some other media sensation. Some other tragedy will show up in our Facebook and Twitter feeds. We’ll read think pieces about something else. But Charlie’s parents won’t move on. They’ll mourn their son, whom they know in a way that no one else does, and whom they love in a way that all of us should understand. And they’ll wonder why, as their son lay dying, no one rushed in to help them try to save his life.