The sorrow and hope of Charlie Gard
This is a phenomenally upsetting story. We must talk about it.
No one could fail to be moved these last few weeks by the plight of Chris Gard and Connie Yates, the English couple whose son, Charlie, was born with a rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome.
This is true especially, I think, of other parents of small children. As I write this, I am staring down at my healthy, happy 8-month-old daughter, who is smiling at me. I smile back, secure in the knowledge that I will live to see her walk, talk, learn to ride a bicycle, make her First Communion, attend college, perhaps marry or embrace religious life. I love her more than I could ever possibly say, and she will be a source of joy to me until I draw my last breath. That is because, barring any hideous unforeseen circumstances, she will almost certainly outlive me.
This will not be the case for Charlie and his parents. He can neither see nor hear nor swallow. Without the aid of a machine he would not be able to breathe. His organs are being slowly destroyed as the mitochondria within his cells is depleted. He is experiencing near-constant seizures. Whether he feels pain is, perhaps mercifully, a question that cannot be answered.
The unimaginable situation in which Chris and Connie have found themselves has brought them and their beautiful baby to the attention of the world. Everyone from Pope Francis to President Trump has expressed support for them.
But this is not to say that there has been anything edifying about how the case — hideous legalistic shorthand for such monumental private anguish — has played out in our public discourse. Reactions to Charlie have rarely showed anyone with the exception of his agonized parents in a good light. The blinkeringly stupid and callous doctors and hospital officials who made what should have been a painful, albeit straightforward point about the real limits of medical care sound like a brief for euthanasia with their talk about what constitutes "a life worth living" and "death with dignity"; the conservative media establishment who have instrumentalized the suffering of a family to score cheap points against "socialized medicine" — all of this was vain, ignorant, and idle talk.
For what were almost certainly the wrong reasons, the hospital officials reached what was very likely the correct conclusion that removing Charlie from a hospital and flying him abroad to receive a ludicrously expensive, highly experimental treatment unavailable on the same continent that has never been used on a patient with his condition was not a prudent course of action. Now his parents seem to have come around to the same view.
It is something that no one wants to talk about, least of all this columnist. But the practice of medicine, like every other human activity, involves certain inherent limits — logistical, financial, technological — that cannot be prudently ignored. The fact that a given procedure exists and could be carried out does not mean that it ought to be.
In a sometimes clunky but ultimately sound statement, Archbishop Vincenzo Paglia, president of the Pontifical Academy for Life at the Vatican, put it very well when he warned against "ideological or political manipulation" and "media sensationalism" before pointing out that we "must do what advances the health of the patient, but we must also accept the limits of medicine and … avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family."
This is how health-care systems must work. We cannot pretend that failing to pursue every hypothetical treatment for the would-be benefit of every potential sufferer from every conceivable illness is an intolerable evil. The reason that a socialized system for the provision of medical care is morally preferable to one that treats medicine as if it were a good or service like any other is that it acknowledges this implicitly. Resources go where they will be effective, not where the jingle of coins resounds. This is not to excuse the diabolic practice of euthanasia, which bureaucrats and physicians who do not understand the first principle of their ancient profession are too happy to embrace as an economy throughout Europe. It is simply an acknowledgment of reality.
It's easy to see why we shy away from this. We are most of us afraid of death because we hear, somewhere, in the back of our hearts, that sinister, falsely authoritative voice of doubt whisper that it is the last thing. But people of faith know that it is not. Rather, it is what St. Paul called "the last enemy": the ancient foe of the human race over whom Christ triumphed totally and for all time at Calvary. It is a hideous fanged shadow hanging on the walls of our terrestrial cave, the last-ditch effort of our first opponent to frighten us from guessing the truth.
Like all evil, which has no qualities proper to itself but lacks all of them, death is not everything — it is nothing.
Should things proceed along their present course, Charlie will die. I will pray for his loved ones, that they not succumb to despair. But there is hope here, too.
When the Catholic Church holds a requiem mass for the soul of a child who has died before attaining the age of reason, the priest does not wear black vestments, but rather white. Bells of mourning do not ring but rather those of festivity, as at a wedding. The text is that of the Votive Mass of Angels because the child immediately enjoys their company. What takes place is, for all intents and purposes, nothing short of a canonization.
I attempt to remind myself of this as I choke back tears while attempting to collect my thoughts on what must be the most difficult subject upon which a writer and a father can be asked to opine.
When little Charlie dies, he will be a saint.