Alfie Evans, a terminally ill toddler whose medical case set off a high-profile legal battle and international debates about health care and parental rights, died early Saturday morning, his parents said on social media.
Pope Francis had been publicly praying and advocating for the 23-month-old boy, and the Italian government offered citizenship to the child and created a plan to take him to a Vatican hospital. But Alfie’s doctors, who took him off life support against his 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 he 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 heart broken,” his mother, Kate James, posted on Facebook. His father, Thomas Evans, posted: “My gladiator lay down his shield and gained his wings at 02:30 absolutely heartbroken I LOVE YOU MY GUY.”
Alfie, who was born in May 2016, was first admitted that year to Alder Hey Children’s Hospital in Liverpool, England, after suffering seizures and had been a patient ever since in what the hospital considered a “semi-vegetative state.” Earlier this month, Thomas Evans met with Pope Francis in Rome and asked the pontiff to see his son in Liverpool.
In a 2018 ruling, one judge wrote that the Evans family’s Catholic faith should be 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,” the Wall Street Journal reported. Catholic bishops in Britain distanced themselves from the Vatican hospital’s offer of treatment and praised the Liverpool hospital, stating that “public criticism of their work is unfounded,” the Journal reported.
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,” Agence France-Presse reported. 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, prompting comparisons to Charlie Gard, a British baby who died last year despite his parents’ fight — with the expressed support of Pope Francis and President Donald Trump — to keep him on life support. Charlie’s parents ultimately gave up their fight to take the baby to the U.S. for experimental therapy to prolong his life, saying there wasn’t a realistic chance of saving him. Trump has not mentioned Alfie’s case.
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.”
On April 23, he tweeted, “Moved by the prayers and immense solidarity shown little Alfie Evans, I renew my appeal that the suffering of his parents may be heard and that their desire to seek new forms of treatment may be granted.”
He also brought up Alfie’s case 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 U.S. 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 Alfie 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. His parents waged a four-month-long battle in the British court system that went to the Court of Appeal, Supreme Court and 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 criticized the hospital fiercely, and Thomas 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.”
(c) 2018, The Washington Post · Sarah Pulliam Bailey