Trump, pope weigh in on ailing British infant
President offers help for boy with rare genetic illness.
President offers U.S. help to family of Charlie Gard, whose rare genetic condition has left him blind, deaf and on life support.
Charlie Gard, who turns 11 months old Tuesday, was born with an extremely rare genetic disease. He is blind and deaf, and he cannot breathe or move on his own.
The London hospital that is treating Charlie went to court to request permission to remove him from life support; his parents want to take him to the United States, where they believe that an experimental treatment has a chance — however remote — of saving his life.
Three courts in Britain agreed with the hospital, as did the European Court of Human Rights, which last week rejected a request by the parents to hear the case, in which they had argued that the hospital was violating the boy’s right to life.
Pope Francis and President Donald Trump have now also weighed in, adding another dimension to an extraordinarily difficult bioethical and legal matter that pits Britain’s medical and judicial establishment against the wishes of the child’s parents.
A Vatican spokesman, Greg Burke, told Vatican Radio on Sunday that the pope had been following the parents’ case “with affection and sadness” and praying “that their desire to accompany and care for their own child to the end is not ignored.”
Trump, who was not known to have expressed a view on the matter previously, wrote on Twitter on Monday that if the U.S. could help, “we would be delighted to do so.”
Both the pope and the president stopped short of criticizing the court rulings or the hospital. It was not clear if the views of the parents — who in recent days appeared to have accepted the finality of the decision — had changed in light of the new remarks.
Charlie was born Aug. 4, 2016, with encephalomyopathic mitochondrial DNA depletion syndrome. He is thought to be one of only 16 children globally with the condition.
His parents, Connie Yates and Chris Gard, both in their 30s, have been waging a long and emotionally wrenching legal battle to keep him alive, and they have raised more than 1.3 million pounds, or about $1.7 million, to help finance experimental treatment in the U.S.
Charlie has been treated at Great Ormond Street Hospital since October. The hospital said that it was acting in the child’s best interests. “When parents do not agree about a child’s future treatment, it is standard legal process to ask the courts to make a decision,” it said in a statement.
Three courts — the High Court on April 11, the Court of Appeal on May 25 and the Supreme Court of the United Kingdom on June 8 — sided with the hospital. The High Court ruled that Charlie would face significant harm if his suffering were to be prolonged without any realistic prospect of improvement. Moreover, it said the experimental therapy would not be effective. The British appellate courts agreed.
At that point, Charlie’s parents took the case to the European Court of Human Rights in Strasbourg, France, citing the European Convention on Human Rights, which protects the right to life, and arguing that the hospital was blocking access to life-sustaining treatment in the U.S.
The European court ruled that the British courts had taken under consideration the views of Charlie’s parents and of medical experts, and had concluded that “it was most likely Charlie was being exposed to continued pain, suffering and distress, and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.”
In some respects, the case recalls that of Terri Schiavo, a Florida woman who was left in a persistent vegetative state after a cardiac arrest. Her husband, who was her legal guardian, sought to have her feeding tube removed, but her parents disagreed, setting off a seven-year fight that ended in 2005 after courts ruled in the husband’s favor and life support was removed from Schiavo, 41.
In that case, too, the pope ( John Paul II) and the president (George W. Bush) weighed in — Bush signed an act of Congress allowing federal courts to intercede in the case — but their interventions did not affect the outcome.
For Charlie and his family, the decision by the European court appears to have brought an arduous legal journey to an end, though an international campaign has been waged, with an online petition and even street protests in front of Buckingham Palace, pleading with authorities to reconsider.
The hospital has not indicated when it would cut off life support.
“Our thoughts are with Charlie’s parents on receipt of this news, which we know will be very distressing for them,” it said, adding that the court’s decision “marks the end of what has been a very difficult process.”
In a detailed statement laying out the ethical and medical justification for not allowing Charlie to travel to the U.S., the hospital said there was no cure for his condition. It said it had concluded that the experimental treatment in the U.S. would “not improve Charlie’s quality of life.”
“One of the factors that influenced this decision was that Charlie’s brain was shown to be extensively damaged at a cellular level,” it said. “The clinician in the U.S. who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred.”
Speaking to British journalists on Friday — before the pope and Trump weighed in — Yates said the family was making its final preparations.
“We are really grateful for all the support from the public at this extremely difficult time,” she said. “We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie.”
Charlie Gard is believed to be one of only 16 children globally with the disease.