Baby at end of life draws support of Pope, Trump
LONDON — A terminally ill British child has attracted the attention of both the Pope and the president of the United States.
More than $1.68 million US has been raised to help 11-monthold Charlie Gard travel to America for treatment. But little has changed for baby Charlie, who suffers from a rare genetic disease that has left him braindamaged and unable to breathe unaided. The life support he is receiving at a London hospital will soon be turned off over the objections of his parents, who want to take him to the U.S. for experimental therapy they believe can prolong his life.
A succession of judges has backed specialists at Great Ormond Street Hospital who say the treatment won’t help Charlie and may cause him to suffer. Britain’s Supreme Court ruled it’s in the boy’s best interests to be allowed to die with dignity. The European Court of Human Rights last week rejected an appeal from Charlie’s parents, Chris Gard and Connie Yates, exhausting their legal options.
They have been spending time with Charlie before he is taken off life support.
By wading into the case in recent days, President Donald Trump and Pope Francis have given Gard and Yates new hope and shined an international spotlight on an ethical debate that pits the rights of parents to decide what’s best for their children against the authorities with responsibility for ensuring that people who can’t speak for themselves receive the most appropriate care.
“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 tweeted Monday he would be “delighted” to help Charlie, who is suffering from mitochondrial depletion syndrome, which causes progressive muscle weakness. His comment came after Pope Francis issued a statement saying the parents’ rights to treat their son “until the end” should be respected.
The Vatican children’s hospital studied whether it was possible for Great Ormond Street to transfer Charlie to Rome. But Bambino Gesu hospital president Mariella Enoc said she was informed the board of the London hospital said Charlie cannot be moved for legal reasons.
However, the matter was still being examined Tuesday.
“I was contacted by the mother, who is a very determined and decisive person and doesn’t want to be stopped by anything,” Enoc told reporters. “She asked us to try to verify the possibility that this treatment is done. And our doctors and scientists are looking into the possibility.”
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.
In the U.S. such disputes are normally negotiated between parents and doctors, according to Arthur Caplan, head of bioethics at New York University Langone Medical Center. A family’s ability to afford endless care usually poses a bigger obstacle than ethical disagreements.