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Sunday, October 22, 2017

Reprinted with permission from Creators.

 

Charlie Gard’s parents were working on the last major decision they will make for him: how he will die. Chris Gard and Connie Yates had given up their fight to secure an effective therapy for their severely brain-damaged 11-month-old baby. They’ve just agreed to have him spend his last days at a hospice.

Most parents in this situation would suffer unrelenting anguish. But the glare of publicity beating down this case has magnified the trauma. Charlie has been turned into an international cause verging on circus.

The staff at Great Ormond Street Hospital, which held that it could not help Charlie, is now receiving death threats. These are people who struggle day in and day out with the stresses of caring for sick and dying children.

Charlie’s parents condemned the attacks, noting, “We too get abuse and have to endure nasty and hurtful remarks on a daily basis.” The former antagonists now find themselves victims of warped minds.

Charlie has a rare genetic disorder called encephalomyopathic mitochondrial DNA depletion syndrome. He cannot open his eyes or move his arms or legs. He can’t breathe without a ventilator. His heart, liver and kidneys are damaged.

Child deaths used to be common. In early-19th-century London, 57 percent of children in working-class families died by the age of 5. Even royal families were not spared. An elaborate set of mourning rituals had been invented to ease families through their grief.

Medical advances have made child deaths far rarer. That’s a wonderful development, of course, but it leaves parents whose children can’t be saved feeling lonelier. And the seemingly daily parade of medical miracles makes them desperate to believe that somewhere, there’s one for them.

Charlie’s doctors at Great Ormond Street Hospital had decided that nothing could be done for him. The parents, however, wanted Charlie to undergo an experimental treatment called nucleoside therapy in the United States. They asked London’s High Court to approve that treatment.

But the judges held that it would be in Charlie’s best interests to die with dignity. They said that the doctors could withdraw life-support.

Charlie’s parents challenged the decision, but the Court of Appeal upheld it. The same happened at the Supreme Court. The parents then went to the European Court of Human Rights, which refused to get involved.

In early photos, Charlie gives all the appearance of being an adorable healthy boy. The millions who saw those images — and perhaps Charlie’s parents, as well — did not appreciate the extent of Charlie’s illness.

The pope offered to help, and so did President Trump in a tweet. They should have stayed out of this. The president of the Royal College of Paediatrics and Child Health called these very public interventions “unhelpful.”

In a last-ditch effort, Charlie’s parents went back to the High Court to argue for the new therapy. The judge said he would consider any evidence that it would work for Charlie. A few days later, an American specialist traveled to London to see whether Charlie would be a candidate for the therapy. An MRI scan revealed that he would not be.

The hospital now believes that Charlie would obtain better care in a hospice than at his home. For one thing, the ventilation equipment could not fit through the house’s front door. That, too, became a point of contention ending in a courtroom.

A last point of contention was where Charlie would stay until he dies. The parents wanted him home. The hospital thought he’d get better care in a hospice. That, too, ended up in court. The parents came around to the hospital’s view.

The parents, the world, are now on a death watch. As for Charlie, doctors don’t know whether he is feeling pain. To the extent that he is aware of anything, Charlie should know this: He is loved.

Follow Froma Harrop on Twitter @FromaHarrop. She can be reached at fharrop@gmail.com. To find out more about Froma Harrop and read features by other Creators writers and cartoonists, visit the Creators webpage at www.creators.com.