Alfie Evans, a terminally ill toddler whose medical case set off a high-profile legal battle and international debates about health care, died early Saturday morning, his parents said on social media. Many activists believed his case raised ethical questions about end-of-life care and parental rights
Pope Francis had been publicly praying and advocating for the 23-month-old boy, and the Italian government offered the child citizenship and created a plan to take the boy to a Vatican hospital. But Alfie’s doctors, who took him off life support against the parents’ wishes, said he couldn’t be healed and shouldn’t make the trip. A judge earlier this week sided with his doctors, who said Alfie suffered from a rare and incurable degenerative neurological condition. The court also ruled that the parents could not seek treatment for him elsewhere because further treatment would be against the child’s best interests.
“Our baby boy grew his wings tonight at 2:30 a.m. We are heartbroken,” his mother, Kate James, posted on a Facebook page, “Alfies Army.” His father, Tom Evans, also posted on his personal Facebook page.
Alfie, who was born in May 2016, was first admitted to Alder Hey Children’s Hospital in Liverpool, Britain, that year after suffering seizures and had been a patient ever since in what the hospital considered a “semi-vegetative state.” Earlier this month, Evans met with Pope Francis in Rome and asked the pontiff to make a trip to Liverpool to see his son. The pope on Saturday tweeted that he was “deeply moved by the death of little Alfie.”
In a ruling earlier this year, one judge wrote that the Evans family’s Catholic faith should be considered as a factor in determining the child’s best interests, quoting Pope Francis distinguishing euthanasia from the discontinuance of overzealous care, which the pope has said “can be legitimate,” according to the Wall Street Journal. Catholic bishops in the United Kingdom, the Journal reports, distanced themselves from the Vatican hospital’s offer of treatment and praised the Liverpool hospital, stating that “public criticism of their work is unfounded.”
British law states that parents “cannot demand a particular treatment to be continued where the burdens of the treatment clearly outweigh the benefits for the child,” according to Agence France-Presse. If an agreement cannot be reached between the parents and doctors, “a court should be asked to make a declaration about whether the provision of life-sustaining treatment would benefit the child.” In Alfie’s cases, judges sided with doctors each time.
The pope’s tweets about the boy drew significant attention to his case, prompting comparisons to Charlie Gard, a British baby who died last year despite his parents’ fight — with the expressed support of the pope and President Trump — to keep him on life support. (Trump has not mentioned Alfie’s case.) Charlie’s parents ultimately gave up their fight to take the baby to the United States for experimental therapy to prolong his life, saying there was no longer a realistic chance of saving him.
Francis has spoken repeatedly about Alfie. “Let us pray that every sick person might always be respected in their dignity and cared for in a manner adapted to their condition, with the concordant input of their families and loved ones, of the doctors and of other health-care workers, with great respect for life,” he said during his Sunday remarks on April 15, after mentioning “little Alfie Evans.”
The pope also brought Alfie’s case up during a Wednesday general audience. “The only author of life, from its beginning to its natural end, is God,” he said. “It is our duty to do all that is possible to safeguard life.”
Alfie’s case, represented by the U.K.-based Christian Legal Centre, has become a subject of fierce concern for many Christian activists in Britain and drew the attention of conservative media and activists in the United States. British protesters clashed with police as they tried to force their way into the hospital, and local police issued a warning after staff were allegedly harassed, saying social media posts were being monitored.
The hospital where the boy was treated said his scans showed “catastrophic degradation of his brain tissue” and that further treatment was not only “futile” but also “unkind and inhumane,” according to the BBC. The couple waged a four-month-long battle in the British court system, which went to the Court of Appeal, the Supreme Court and the European Court of Human Rights.
The hospital said in a statement that it consulted with outside doctors, including ones in Rome, who concluded that the child’s condition was “irreversible and untreatable.” After his death on Saturday, the hospital released a statement offering its “heartfelt sympathy and condolences” to the family.
During the legal dispute, the couple had fiercely criticized the hospital, and Evans described his son as a “prisoner.” On Thursday, however, he thanked the family’s supporters but asked them to go home so the parents could build a relationship with the hospital to provide the toddler “with the dignity and comfort he needs.” He thanked the hospital staff “at every level for their dignity and professionalism during what must be an incredibly difficult time for them too.”