The Telegram (St. John's)

U.S doctor: Treatment ‘worth trying’ in UK sick baby case

- BY CAROLINE SPIEZIO

An American doctor testifying in the case of a British couple seeking the right to take their critically ill infant to the United States for treatment said Thursday it was worth trying an experiment­al therapy that has only recently emerged.

The doctor, whose name and institutio­n cannot be named because of a court order, told Britain’s High Court that new clinical data has emerged about the effectiven­ess of the treatment proposed for 11-monthold Charlie Gard, who suffers from a rare genetic condition and is on life support.

Judge Nicholas Francis said the doctor should come to London to see Charlie and meet other experts. At the end of an eight-hour court hearing Thursday, Francis said “no hearing can resume” until that happens.

The boy’s family is locked in a legal battle with Britain’s most famous children’s hospital because they disagree on whether trying the experiment­al treatment is in Charlie’s best interest. The case attracted internatio­nal attention after President Donald Trump and Pope Francis weighed in.

“We have a much better understand­ing of the data,” the doctor testified, saying the informatio­n has emerged in the time since judges first rejected the parents’ bid to take him to America.

Charlie suffers from mitochondr­ial depletion syndrome, a rare genetic disease that has left him brain damaged and unable to breathe unaided.

Specialist­s at Great Ormond Street Hospital have fought the parent’s bid for therapy because they don’t think it will help and may cause him pain. The hospital says Charlie should be allowed to die with dignity.

A succession of courts has backed the hospital, but the case returned to the High Court Thursday after claims of new evidence and the high-profile interventi­ons.

The U.S. doctor estimated the chance of “clinical meaningful success” for an improvemen­t in Charlie’s muscle use to be at least 10 per cent, but offered no conclusion on whether the infant’s brain function would improve.

The treatment, known as nucleoside therapy, is not a cure. The doctor said he’d be willing to travel to Britain to see the child.

The emotional toll on all involved has been clear.

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