Law, ethics, and emotion: the Charlie Gard case

A 10 month old baby lay in the intensive care unit at London’s Great Ormond Street Children’s Hospital, kept alive by a mechanical ventilator and fed by a tube. Unable to breathe unaided or move his arms and legs, he had epileptic seizures which, because he was unable to move, could be detected only by electroencephalography. His brain had severe damage.

Doctors at the hospital believed they could do no more for Charlie Gard, a baby with an exceptionally rare inherited disease, infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). Caused by mutations in a gene called RRM2B inherited from both his parents, the condition leads to severe depletion of mitochondrial DNA in his tissues. The clinicians treating him thought that he was in the final stage of the disease and that they were no longer serving his best interests by keeping him alive.

But Charlie’s parents, Chris Gard and Connie Yates, refused to give up. They found a professor of neurology at a mainstream medical centre in the United States who was willing to give him nucleoside therapy, an experimental treatment that has never been given to a patient with the RRM2B form of MDDS. And they raised more than £1.3m (€1.5m; …