Fate shouldn’t be decided by state
Charlie Gard’s parents are doing the wrong thing — and I’d probably do it too. Charlie Gard, if you haven’t heard, is the 11-month-old baby whose plight has become a popular cause in England and, increasingly, the United States.
Charlie seemed like any other healthy baby when he was born. His parents, Connie Yates and Chris Gard, were ecstatic. But when they later noticed that he was struggling to move his head, they consulted doctors who ultimately diagnosed Charlie with infantile onset encephalomyopathic mitochondrial DNA depletion syndrome.
In brief, Charlie lacks the DNA to create enough mitochondria, which provide energy to cells in the muscles and the brain. It’s a fatal disease — and incredibly rare. Charlie is the 16th documented case worldwide.
Charlie’s doctor’s at Great Ormond Street Hospital told his parents there was nothing to do other than to make Charlie as comfortable as possible before he dies.
His parents saw it differently. A doctor in the United States reached out and suggested a treatment called nucleoside therapy. To call this treatment unproven and experimental is a bit of an understatement. There haven’t even been trials in mice, according to the BBC.
Still, the hospital was open to the idea before Charlie’s condition deteriorated and he began to suffer from extreme seizures, caused by a brain disorder called epileptic encephalopathy. The doctors decided that the experimental therapy wouldn’t be therapeutic, never mind curative. It would only stretch out the infant’s suffering and the parents’ agony.
Legal battles ensued. Crowdfunding efforts were launched. Petitions signed. Tabloids unleashed their fury, sometimes cruelly hyping the likelihood of a cure. The case went all the way up the ranks of the British legal system and then, on final appeal, to the European Court of Human Rights, which on June 27 refused to overrule the hospital
But earlier this month, Pope Francis and President Trump expressed support for the parents. On Monday, the British High Court reopened the case “in light of claims of new evidence” that there are possible treatments abroad.
From everything I’ve read and the doctors I’ve talked to, that sounds extremely unlikely. The theoretical window for nucleoside therapy to have helped has almost certainly closed. Charlie is brain damaged on a cellular level. He can’t breathe without a ventilator. The doctors and courts believe it would be best for Charlie to pass as peacefully and as comfortably as possible.
Still, the parents are undaunted. As father Chris Gard said, “There is nothing to lose, he deserves a chance.” As a parent, never mind someone who had to take his own brother off a respirator, I have nothing but sympathy for Connie and Chris. But it’s not quite true that they have nothing to lose. The agony of dragging this out is a real price, not just in terms of time and money, but emotionally. Charlie’s parents are convinced their baby feels no pain. The doctors are not.
If I were counseling them, I would suggest it’s time. But if I were their doctor or one of the judges presiding over the case, I would let them take their baby for treatment.
Some of my friends on the right, for understandable and laudable reasons, want to make this case all about the right to life, euthanasia and various appeals to hope or faith.
I see it far more as a matter of due process. In every liberal democratic country dedicated to the rule of law, the state has to jump through hoops to deny citizens their rights. Even when the state knows a criminal is guilty, it still must go through the motions and prove its case.
Charlie’s parents aren’t criminals, they’re distraught parents. And parents have rights. They aren’t absolute rights. Parents can’t kill their children or let them die through inaction.
But the state can.
Societies depend on the principle that parents are their children’s best guardians. It’s appalling for the state — particularly one that runs the health-care system — to claim that it, not the loving parents, have the final say.