Belief so often conquers wisdom

The torment of the Gards

If you have not known fear before, you find out what it tastes like when you bring a baby home. You live the rest of your life a little afraid – maybe a lot afraid sometimes – that your child will be hurt, or suffer, or worse.

When she was 9 years old my daughter had an accident at a ski hill and was taken by ambulance to the nearest country hospital. She was strapped to a backboard, as a precaution. Evidently the triage assessment was that her case was not urgent, so we sat for a long time behind a curtain, waiting for the one ER doctor to grace us with her presence.

I grew furious about the wait. Where the hell was the doctor?!  My daughter – 9 years old and still strapped to the board and with a brace around her neck, admonished me to be reasonable: “We’re not the only people here, dad.”

“You are to me” I said. “You are the only person here, as far as I’m concerned.” That is what parenting feels like.

(She was fine by the way.  Just a bruised tailbone. It hurt, though. )

There is nothing more harrowing than the fear of a child’s injury, except of course the harrowing loss of a child.  So it must be for the sad parents of Charlie Gard, the incurably ill British baby who will die the moment extraordinary measures are halted. The baby has no real life now and is doomed to stay that way, or to die.  The parents want to do anything imaginable – including only things that are imaginable, but not viable – to change their child’s fate.

The desperate Gard parents are prepared to have machines pump air into the inoperative lungs of their brain dead baby, presumably forever, and to do any other procedure some charlatan talks them into.  Because they want to believe in what apparently is not real – that there is hope.  A hope that no one with any expertise, knowledge or experience will say is possible: the hope that their baby can live a real life.

This conflict between the parents’ wishful thinking and the experts’ judgment has become a proxy battle, in the great struggle of our time: popular sentiment versus unpopular truth.  Magical thinking over evidence and science. The triumph of ignorant belief gave the world ISIS, to name just one malignant fantasy-based thought system. (also Brexit and Trump, instead of the rational, infinitely superior alternatives that were on hand.) Now it plays out in a UK hospital room.

The Gard case has also devolved into an argument between those desperate parents and the UK medical system; the latter sees the baby as a victim of its parents’ clutching at straws. The state has adopted the view that no further extraordinary measures should be taken. The parents disagree and are fighting an uphill legal struggle to take their child overseas for some “cure.”

Many sympathize with the parents, and there has been much gnashing of teeth about the evils of the state acting as parent. The argument is that the government cannot know better than parents and should not be able to dictate decisions about a child, in place of the parents’ judgment.

This is not new territory. The state will often substitute its judgement for someone deemed incapable, and it will actively intervene to protect vulnerable people from more powerful people, whose decisions might hurt the vulnerable.

Children are not the property of their parents. Children are people with rights – including a right NOT to be tortured by parents with fantasies about a medical miracle. What the parents believe cannot decide the case. We don’t let parents starve kids, or refuse them medical care, or abuse them – for any “good reason” or belief the parent may have.

Again, parents do not own children. When a parent substitutes their own terrible judgment about what is right for a child, inflicting suffering on that child, the law may intervene to speak up for the child. Right now, that’s what is happening with Charlie Gard.

We should be glad of it. The people speaking up for that poor, voiceless doomed baby, are heroic in their decency and professionalism.  Someone has to protect that child’s interests. The parents do not appear capable of it, because their beliefs have conquered their wisdom.

I note also that everyone else in British society is paying for this nightmare to drag out – in the hospital, in the courts – and no one seems to give a damn about that. We don’t “pull the plug” over cost, but at the very least we should be cognizant that every pound spent on the Gard case is money that won’t help someone who is not brain dead.

Again, this is not new territory.  The Gard parents are either factually right or wrong about their child’s prospects for recovery. They love the child and have a real say in what happens. But they do not get to inflict torture on a baby, or drain the health care system of money, to indulge their desperate hopeless dreams.

One hopes the Gards find some wisdom and peace of mind. One also wishes them relief from the agony they feel. Perhaps if they could relieve their child’s torment, they might then begin to recover from their own. The parents at least have the chance of a real life ahead of them. Charlie does not.