The High Court in England heard fresh evidence on Monday in the case of a terminally ill British baby at the center of a medical and ethical debate.
Eleven-month-old Charlie Gard has a rare genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness and brain damage. He is currently on life support and unable to move his limbs or eat or breathe without assistance. His parents, Connie Yates and Chris Gard, want to take him to the U.S. for nucleoside therapy.
The Family Division of Britain’s High Court in London ruled in April that medical experimentation is not in “Charlie’s best interest,” and denied the family’s request to travel for the trial treatment.
Great Ormond Street Hospital (GOSH) — where Charlie is currently being treated in the intensive care unit — describes the proposed experimental therapies as “unjustified” and said the treatments being offered are not a cure and would only result in more suffering. They have argued that the 11-month-old should be allowed to die with dignity.
However, the hospital decided to go back to court on Monday after researchers at two international healthcare facilities said they have “fresh evidence about their proposed experimental treatment.”
Charlie’s story has gained worldwide attention. President Donald Trump and Pope Francis have voiced their support for the parents. And on Sunday, his parents handed in a 350,000-signature petition calling for their son to travel to the U.S. for treatment.
Yates told BBC Radio 4 early Monday that attention brought by comments from Trump and the Pope had turned their son’s fight for survival into “into an international issue.”
Trump tweeted last week that “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.”
A White House official later said that members of the Trump administration had been in contact with the parents in calls facilitated by the British government.
Yates described the situation as a “living hell.”
“I couldn’t sit there and watch him in pain and suffering, I promise you I wouldn’t,” she said in an emotional interview with BBC Breakfast, adding: “I think parents know when their children are ready to go and they’ve given up and Charlie is still fighting.
“It’s horrible that this decision has been taken out of our hands, it’s not just about us knowing best, it’s about having other hospitals and doctors saying we want to treat and we think it’s the best thing to do.”
She said she hoped the judge would take into account new evidence as when the decision was made previously, his chance was rated at being close to 0 percent but now this has been increased to 10 percent.
Charlie’s father, Chris, said that they would stop the treatment if they believed it was harming their son.
“If we won the court case and we got to America, and then within the first week of treatment he started suffering and he was in pain, we would let him go,” he said.