The short, tragic life of Charlie Gard
Charlie Gard didn’t live long enough to celebrate his first birthday. It would have come this Sunday. The shortness of little Charlie’s life is a tragedy. But his life itself was equally a tragedy. Because Charlie stopped being a baby, and became a cause.
Charlie was born with a rare, incurable, untreatable, and always fatal, hereditary disease, infantile onset mitochondrial DNA depletion syndrome (MMDS). According to one news story, only 16 people in the world have ever had it.
Charlie didn’t choose it; he didn’t do anything to cause it; it just happened.
At the risk of over-simplifying, human cells have three parts. DNA, the double-helix blueprint in the cell’s nucleus. Cytoplasm, a jelly-like fluid that replicates the primordial sea from which we all came. And the cell membrane, the sack that holds it all together.
Think of mitochondria as fish that swim in that sea, producing energy for the cell’s operation.
Charlie’s mitochondria malfunctioned. They couldn’t produce energy for his life.
As Alheli Picazo explained in Maclean’s magazine, “MDDS starves Charlie’s muscles, kidneys and brain of the energy needed to function … Charlie also suffers from frequent seizures and has extensive, irreversible brain damage.”
Doctors at Great Ormond Street Hospital in London argued that Charlie should be allowed to die. Palliative care would make what was left of his life as painless as possible. They applied for permission to have his ventilator switched off.
But Charlie’s parents, Connie Yates and Chris Gard, refused to accept that he was dying. I can’t blame them for that. I would have done the same. But then Charlie became politicized. A neurologist in the U.S. claimed that an experimental treatment — tried on just nine people, none with MMDS — might improve Charlie’s chances. Charlie’s parents grabbed at a straw of hope. Sympathetic crowd-funding raised 1.3 million pounds toward treatment in America.
Yates and Gard took Charlie’s case to court. Right up to the British Supreme Court, and then to the European Court of Human Rights. Four levels of courts all ruled in favour of the medical evidence.
Then the conservative Christian caucus in the U.S. grabbed Charlie and ran with him. Congress considered making him an honorary U.S. citizen. The Susan B. Anthony List lobbied 500,000 members on his behalf.
President Donald Trump saw political advantage in meddling in another country’s legal system. “If we can help little Charlie Gard … we would be delighted to do so,” he tweeted.
Syndicated columnist Michael Coren called Trump’s intervention “Typically irresponsible and insensitive … It’s colossally ironic that as he removes medical insurance from millions of Americans, the president makes an empty gesture to a dying child.”
U.S. evangelical pastor Rev. Patrick Mahoney, a fervent anti-abortionist, flew to London to become self-anointed spokesperson for Charlie. Pro-life groups picketed the hospital. They called the doctors “murderers.”
Staff received death threats. The term “death panels” was bandied about.
These are the same people, you may recall, who declared that the Canadian medical system included “death panels” during the early debates over Obamacare.
And the same people who demand that all fertilized ova must proceed to birth. Even though in this instance — had Charlie’s disability been diagnosed early enough — an abortion might have spared Charlie and his parents a year of agony.
And they’re the same people who lobby against medically assisted suicide for the terminally ill. On the grounds that human life is sacred. Only God has the right to decide when a life should end.
God would have ended Charlie Gard’s life months ago, if human intervention had not artificially prolonged it.
They are not, in fact, pro-life at all. They are pro-suffering.
They believe in a vindictive God who doles out rewards and punishments. They’re confident they’ll receive the rewards. But if someone else is suffering, even a one-year-old baby, it must be God’s will.
In the meantime, the neurologist who started it all admitted that the treatment he had proposed was based only on “a theoretical scientific basis.” Given Charlie’s “catastrophic and irreversible brain damage,” he conceded it was “unlikely” the experimental therapy would do anything more than “prolong Charlie’s suffering.”
On Monday, Connie Yates and Chris Gard recognized this was no longer about Charlie’s life. It had become what Coren called “a clash of cultures.” And so, they announced that they were going to let Charlie die.
Good for them. And a pox on those who tried to exploit little Charlie to support their own ideologies
Jim Taylor is an Okanagan Centre author and freelance journalist. He can be reached at firstname.lastname@example.org.