Tom Evans, with his head hung low, looked only once at the camera Thursday as he read a prepared statement asking supporters of his ailing son Alfie to “stand down.” Evans wanted to deescalate the tension so he and Alfie’s mother, Kate James, could “build a bridge” with the Liverpool, England, hospital seeking the end of their toddler’s life.
Evans’ strong Liverpudlian accent had previously tumbled out fiery defenses of his son’s right to life and criticisms of court rulings against him. For months, Evans and James fought a system that decided at the highest level that removing the 23-month-old’s life support was in his “best interest,” ultimately trumping the couple’s parental rights.
Alfie’s parents ultimately lost their fight when their son died early Saturday morning, after lingering for days at Liverpool’s Alder Hey Children’s Hospital without life support. Doctors, who didn’t expect Alfie to live that long once the plug was pulled, insisted his brain had degenerated beyond recovery and declared he should die.
In February, High Court Judge Anthony Hayden concluded from the doctors’ testimonies that severe brain deterioration due to an unknown disorder had left Alfie unable to see, hear, or respond to any stimuli. He admitted that “life itself has intrinsic value, however tenuous or vestigial its hold,” and a visit to Alfie’s hospital room, filled with toys and gifts from supporters, convinced him the child’s “life has true dignity.”
But Hayden ultimately decided Alfie would benefit most from having his ventilator disconnected. The U.K. Supreme Court upheld the decision in March, citing the UN Convention on the Rights of the Child, which Britain ratified in 1991. Under this treaty, the court ruled, a child’s rights “will, if inconsistent with the rights of his parents, prevail over them.”
Stefano Gennarini, director of legal studies at the Center for Family and Human Rights, told me the treaty doesn’t prescribe the removal of life support for brain-damaged toddlers. But courts have used the “free-floating principle” of a child’s best interest to trump parental rights in cases like Alfie’s, instead of using it “when parents have failed to provide protection for their children.”
Far from failing to provide protection, Evans and James sought to transfer Alfie to Rome’s Bambino Gesú Hospital, which awaited them with open arms. The parents hoped the Italian hospital could give a diagnosis for their son and continue providing life support. Pope Francis met with Evans earlier this month, and the distraught father told him, “Our child is sick, but not dying and does not deserve to die. He is not terminally ill nor diagnosed. We have been trying our best to find out his condition to treat or manage it.”
But days after that meeting, Britain’s High Court again rejected the couple’s appeal, and last Monday the European Court of Human Rights refused to hear their case. Hours later, the hospital removed Alfie’s ventilator.
It’s not the first time British courts have overruled parents’ wishes to continue fighting for a disabled child’s life, and it’s unlikely to be the last. “It happens on a daily basis,” Gennarini told me. “There are just very few families that actually challenge the bureaucracy.”
Last year, the world watched as parents Chris Gard and Connie Yates fought for their son, Charlie Gard. They took his case to the highest level of the British judicial system in an unsuccessful bid to stop staff at Great Ormond Street Hospital in London from switching off his life support. Parents of Isaiah Haastrup similarly lost their court battle last month to continue treatment for their son, who breathed on his own for several hours after hospital staff removed his ventilator.
Alfie’s parents continued to fight for his life after he started breathing on his own last week. Despite Italy putting an air ambulance on standby to take Alfie to Rome, Hayden stood by his initial ruling that death was in Alfie’s best interest. The Court of Appeal upheld an earlier High Court ruling, nixing the couple’s final effort to procure a transfer for their son. Evans and James stood by and watched Alfie’s condition deteriorate until he died at about 2:30 a.m. Saturday.
Charlie Gard’s parents, along with thousands of other supporters, expressed their condolences on Facebook. Evans and James wrote on their son's support page that they were “heartbroken” at his passing, and supporters released thousands of balloons in tribute.
The staunch refusal to release Alfie to another hospital’s care serves as “an example to others who want to challenge” doctors’ decisions, Gennarini told me. “On one level it’s human arrogance and vanity, without a doubt,” he said of the doctors involved. In addition, he warned that hospitals can’t afford to lose such a high profile case: “They have to find some way to get the parents to submit to the doctors.”
Two days before Alfie’s death, Evans finally did submit, thanking the hospital staff for their “dignity and professionalism during what must be an incredibly difficult time for them too,” and agreeing to accept only comfort care for his son.
Gennarini described Britain’s National Health Service (NHS) as “on the verge of collapse.” Cases like Alfie’s amount to “health rationing” in a system that can’t prioritize people with a grim prognosis.
“You’ve got doctors deciding whose life is worth living,” Gennarini said. “It has nothing to do with whether or not the treatment is futile.”
But outrage sparked by the case could give other parents hope. Steven Woolfe, a member of the European Parliament from North West England, has launched a campaign for “Alfie’s Law,” a measure that would give parents more weight in medical decisions for their children.
“In Alfie’s case, many feel that the NHS has closed ranks, and that ‘groupthink’ within the organisation has meant that doctors cannot question their colleagues’ assessments,” Woolfe wrote. “We cannot let this continue.”