The case of little Charlie Gard should strike fear in the heart of every parent. You’re probably familiar with his story. Baby Charlie was born last year in the UK and suffers from a rare, debilitating condition. He can’t breathe on his own and has other serious health problems. In March, Charlie’s doctors at the Great Ormond Street Hospital in London wanted to remove him from life support and let him die. His parents wanted to try an experimental treatment.
For months, Charlie’s parents fought a legal battle to prevent the hospital from shutting off his life support. A few weeks ago, the UK Supreme Court ruled that the hospital could shut off the life support at will and that Charlie wasn’t allowed to leave the hospital, effectively making him a prisoner of the UK public health system. Charlie’s parents continued to seek review in the courts. The hospital continued to fight them until Charlie passed the point where he could benefit from the experimental treatment. If the hospital had yielded to his parents wishes months ago instead of standing in the way, maybe this story would have had a different outcome. This is a total victory for the hospital, which said in a court filing that it doesn’t believe in a “world where only parents decide for children.” It seems they’re getting the world they want.
The deck was stacked against Charlie’s parents from the beginning. Under British law, the state has an expansive role in acting in the best interest of the childa role that comes at the expense of parental rights. When parents and doctors disagree on the course of treatment for a child, the dispute goes to the courts. By forcing parents to go to court when they disagree with their child’s doctors, it’s as if the doctors and parents have an equal say in these matters. They don’t.
There should be a strong presumption in the law that the people who brought a child into the world and have loved and cared for that child from birth are acting in the child’s best interest with all other opinions being a distant second. Parents shouldn’t be treated as just one voice among many when it comes to caring for their sick child.British law runs roughshod over the natural right of parents to care for their children. In deciding these cases, the British courts consider whether a child is suffering and how much benefit a proposed treatment might produce. These are legitimate concerns, to be sure. But shouldn’t the child’s parents answer these questions, not judges? Judges may know the law, but parents know their children.My wife and I just had our first baby, a little boy, about a month ago. It’s hard to think of Charlie Gard without thinking of our son. I can hardly imagine my wife and I in a situation where our rights as parents mean so little and our son’s very life depends on the benevolence of the state. For Charlie’s parents, it must be their worst fears become reality.
Could something like this happen in North Carolina? As things stand now, it’s highly unlikely. North Carolina law recognizes that children are under their parents’ supervision and control when it comes to medical treatment. Parents have the right to seek whatever treatment they want for their child unless the treatment constitutes child abuse. Thankfully, life-prolonging treatment is never considered child abuseat least for now.Parents have to remain vigilant. Our healthcare system looks a lot more like a European model than it used to. We need to be sure we don’t also import European ideas about parental rights. We also need to support judicial candidates for our trial and appellate courts who will be faithful to the letter of the law and not interpret child abuse statutes as applying to parents seeking treatment for a sick child.
The land of Magna Carta is now a place where the rights of parents are trampled by medical experts, hospital bureaucrats, and government officials. It’s a place where the state has the power to reach into your life and take away the most precious thing you have. It’s nothing short of terrifying. When I lay my son down tonight, I’ll take a moment to thank God I’m an American.
Luke Farley is an attorney and lives in Durham with his wife and son.