Parents of ailing baby make plea in U.K. court
They are seeking permission to send British boy to U.S.
Charlie Gard’s parents want the 11-month-old with rare condition to get experimental treatment.
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 on Thursday.
Charlie’s parents want to allow him to be treated with an experimental therapy pioneered by a neurologist in the United States. The London hospital that is treating Charlie and several courts have found that 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.
Justice Nicholas Francis of the High Court — who in April ruled that 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, medical experts said, brain circumference can indicate damage to the brain.
The judge heard testimony via video link from a neurologist in the United States who has promoted an experimental therapy that 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 judge has barred journalists from identifying the neurologist, known only in court papers as Dr. I, but New-York-Presbyterian Hospital/Columbia University Medical Center went on record last week to say that it was willing to admit Charlie as a patient or send an experimental drug to London.
Pressed by Victoria Butler-Cole, a lawyer for the infant’s appointed guardian, the neurologist also acknowledged that the disease had no cure. He insisted, however, that the therapy had a small chance of improving the baby’s cognitive function — even though he told the court in April that the boy had suffered significant brain damage, and even though he acknowledged that the child’s condition had only worsened since then.
In the United Kingdom, disputes like Charlie’s rarely end up in court, but when they do, it is the courts — not the parents — that have the final say in determining what is in the best interests of the child.