The president of the United States has offered to help a terminally-ill British baby. The pope has asked for the rights of the parents to be respected on his care. More than 1.3 million pounds ($2.17 million Canadian) has been raised to help him travel to America for treatment.
But little has changed for 11-month-old Charlie Gard, a British infant suffering from a rare genetic disease that has left him brain damaged and unable to breathe unaided. President Donald Trump and Pope Francis have put an international spotlight on the case of Charlie, whose parents have lost successive court battles to try to take their son to the United States for an experimental therapy they believe could prolong his life.
On Tuesday, Chris Gard and Connie Yates were spending time with their son before his life-support is turned off.
Judges have backed specialists at Great Ormond Street Hospital who say the proposed treatment won’t help Charlie and may cause suffering. Britain’s Supreme Court ruled that it’s in Charlie’s best interests to be allowed to die with dignity.
“The world is watching,” reads the headline across the top of charliesfight.org, the website dedicated to Charlie’s cause.
“Two of the most powerful men in the world want to give Charlie Gard his chance.”
Trump waded into the case Monday, tweeting that he would be “delighted” to help Charlie, who is suffering from mitochondrial depletion syndrome, which causes progressive muscle weakness. That comment came after Pope Francis issued a statement on the case, saying the parents’ rights to treat their son “until the end” should be respected.
The Vatican children’s hospital is studying whether it can take Charlie in. Mariella Enoc, president of Bambino Gesu hospital, said she had asked the medical director to get in touch with Great Ormond Street to determine if it is possible to transfer him to Rome.
“We know that the case is desperate and that as far as we know there aren’t effective treatments, but defending human life, above all when harmed by sickness, is a commitment of love that God entrusts to all of us,” Enoc said, echoing a papal tweet last week.
The case is not about money: Charlie’s parents have used a crowdfunding website to raise the money needed to pay for his treatment in the U.S. It revolves around an ethical debate about what’s best for the child.
Under British law, it is normal for courts to intervene when parents and doctors disagree on the treatment of a child – such as cases where a parent’s religious beliefs prohibit blood transfusions.
The rights of the child take primacy, rather than the rights of parents to make the call. It is a principle that applies even in cases where parents have an alternative point of view, according to Britain’s Court of Appeal.
And Britain’s courts have been consistent in this case – three courts agreed that the experimental treatment would be futile and may “well cause pain, suffering and distress to Charlie.” The parents then took their case to the European Court of Human Rights, which refused to intervene and endorsed the British judges’ decision.
“This was a decision about what is best for this child,” said Claire Fenton-Glynn, an academic at the University of Cambridge who studies children’s rights. “This is an incredibly difficult decision for the court, and it’s not one that the doctors or the court have taken lightly.”
“It’s this terrible, terrible situation,” she said. “It’s a horrible thing to have to decide.”