National Post (National Edition)
Frustration in case of baby with brain damage
LONDON • They couldn’t agree on whether the baby feels pain. They couldn’t agree on how badly his brain has been damaged. They couldn’t even agree on the size of his head.
Lawyers for opposing sides in the case of Charlie Gard, a British infant with a rare genetic disease whose plight has attracted the notice of Pope Francis and President Donald Trump, clashed repeatedly in a London courtroom Thursday.
Charlie’s parents want to allow him to be treated with an experimental therapy pioneered by a neurologist in the U.S. The London hospital treating Charlie and several courts have found he is suffering, cannot be saved and should be allowed to die with dignity.
Charlie’s parents at one point stormed out of the courtroom, visibly frustrated at the resistance to their bid to keep their son alive. At various points, Connie Yates, his mother, shook her head defiantly while her husband, Chris Gard, clasped Charlie’s toy monkey and stared plaintively at the ceiling.
Justice Nicholas Francis of the High Court — who in April ruled the hospital could take the baby off life support, and whose ruling has been repeatedly upheld — appeared frustrated at having to revisit the case.
He expressed dismay that the two sides could not agree on the size of Charlie’s head — a crucial question, since brain circumference indicates whether a child is growing or not.
“It is absurd that the science of this case is being infected by the inability to measure a child’s skull,” he said.
The judge heard testimony via video link from a neurologist in the U.S. who has promoted an experimental therapy he believes could help the boy, even though it has never been tried on anyone with the mutation that makes Charlie’s form of the disease — mitochondrial DNA depletion syndrome — particularly severe.
The neurologist said the treatment, known as nucleoside therapy, had been shown in mice to extend lifespan. He estimated the chance of clinical improvement of muscle function — defined as not having to constantly use a breathing machine — at 10 per cent, but he acknowledged the estimate derived from his work with patients with a mutation known as TK2, not the rarer mutation, RRM2B, that Charlie has.
Defying the consensus of British doctors, the neurologist said he could not be certain how much structural brain damage the baby has. He admitted, however, that he had not seen the boy or reviewed his medical records. The neurologist also acknowledged the disease has no cure.
The issue has become a flash point on both sides of the Atlantic. Some demonstrators protested outside the court. The judge warned that the hospital had received threats.
The judge said he hoped to issue a decision next week.