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The tragedy of the Charlie Gard case

By Rebecca Horvath • Aug 13, 2017 at 12:00 AM

Even six years later, I still recall the feeling with tremendous clarity. I sat, helpless, in a neonatal intensive care unit beside my youngest child. We were lucky: doctors diagnosed and treated her frightening breathing problems and sent her home days later in near-perfect health, but I will never forget the paralyzing sense of helplessness.

As a parent, there is no worse feeling than watching your child suffer and being unable to help. That helpless despair is difficult even when a child is suffering from a garden-variety illness or injury that has an end in sight. So I can’t imagine the horror Charlie Gard’s parents must have felt as they watched him suffer for months, knowing he was dying.

Charlie Gard became a household name this summer when his plight made international news. The British infant suffered from an extraordinarily rare genetic disorder discovered a couple of months after his birth last year. He spent months in treatment at a London hospital and died in late July, just days before his first birthday.

Sadly, this story is not entirely uncommon, even if Charlie’s specific illness was. Most of the time, we don’t hear much about these cases unless it involves someone we know. But Charlie’s case attracted so much attention because of the unusual fight his parents waged to try to save his life.

British doctors insisted that there was no way to cure Charlie’s condition and, given his nearly vegetative state, the only option was to keep him comfortable and let him die. His parents, naturally, were not willingly to go quietly.

They spent weeks in court battles over control of their son’s fate. (Unlike in the States, British government gets involved in end-of-life decisions. We leave them up to the designated surrogate, but across the pond, courts resolve these issues.) Charlie’s parents wanted to bring him to the United States for an experimental treatment that might have saved — or at least extended and improved — his life. The British courts would not allow it. When the parents were ordered by the courts to discontinue life support, they begged doctors to allow them to take Charlie home to die. The courts would not allow that either.

Parents will do everything in their power to help a child — go anywhere, try anything — no matter how small the chance of success. The tragedy of Charlie Gard is not just in his death at such an early age, but in the role of the court in hastening his death. Even with treatment, Charlie might still have died, but at least his parents could have had the peace of knowing they tried everything possible. The state not only allowed their child to die, but gut-punched them by tying their hands.

The courts were acting in what they believed to be his best interest. Rather than prolonging his suffering and delaying his inevitable death, they did the “humane” thing. But the problem is, that’s how we treat dogs — we put Rover out of his misery if we must, but we wouldn’t dream of assigning a child the same fate and we certainly wouldn’t make such a decision for someone else’s child.

It was heartening to see the compassion that came from every corner — American doctors offered to treat Charlie, President Donald Trump extended a generous offer of help to the family and Pope Francis offered his prayers. In a world where the sanctity of life is often disregarded, it was encouraging to see so many people express outrage about the situation. It restores faith in humanity to see people pull together to oppose something as inhumane as stopping parents from trying to save a child’s life.

At the root of Charlie Gard’s case is a cautionary tale of socialized medicine. When the state controls the fate of a patient, humanity loses. A single patient means nothing to the state but everything to his family. In Charlie’s case, the state essentially said, “we own Charlie, so we’ll decide what happens.” Parental rights were stripped away by the state footing the bill. Even when his parents raised enough money for any treatment available, the courts would not allow them to seek it. They were helpless to do anything but watch their precious son die.

While the healthcare debate stateside may rage on, it’s imperative we remember little Charlie Gard’s story. We will see more like it if we continue down the path of single-payer insurance. That’s big government — Big Brother, even — at it’s very worst, taking rights away from patients and families and giving them to the state. When we allow government to force us to buy insurance, we are not far away from that government forcing us follow its orders instead of maintaining the autonomy our Constitution grants. Our children and families deserve so much better than that.

May Charlie rest in peace and may God bless his grieving parents.

Rebecca Horvath of Johnson City is a wife, mother and community activist. You can reach her at rebeccasjh@hotmail.com

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