As this is being written, Alfie Evans is clinging to life, more than 18 hours after medical personnel disconnected life support and left the 23-month-old child to his fate.
“For nine hours, Alfie’s been breathing,” wrote his father, Tom Evans, this morning, following an unbroken succession of “horrendous, scary, heartbreaking hours.” The hospital removed Alfie from a ventilator at 9:17 p.m. last night, but after sustained independent breathing, hospital officials were “forced morally to put him back on water and oxygen,” according to Roger Kiska of Christian Concern, which is advocating for Alfie.
Alfie’s parents – Tom, who is 21, and Kate James, who is 20 – find themselves trapped in a legal nightmare: The medical care their infant child needs to stand a chance of survival hinges on the approval of judges and government officials. So far, those officials have denied him the opportunity to take advantage of the treatment others in another nation are eager to provide.
Late Tuesday, the High Court ruled against the family’s last-ditch appeal. Justice Anthony Hayden concluded, “This represents the final chapter in the case of this extraordinary little boy.”
When Alfie showed signs of developmental delays as a baby, doctors reportedly told his parents Alfie was “lazy and a late developer.” At seven months, he caught an infection that triggered seizures and ultimately put Alfie on life support at Liverpool’s Alder Hey Children’s Hospital. After a series of advances and reversals, doctors decided Alfie had an incurable, rare – and thus far unclassified – degenerative neurological condition. The hospital pronounced Alfie beyond recovery and decided that withdrawing all care would be, in the words of its legal representative, in “his best interests.”
Understandably, his parents wanted to pursue every avenue of treatment, but the hospital’s barrister deemed any additional help “unkind and inhumane.” Tom and Kate fought their way through the UK and continental court system – being turned down by “the high court, supreme court, and the European Court of Human Rights” – before losing an appeal Monday night.
The young couple secured the support of Pope Francis, who opened the doors for Alfie to receive unspecified “new forms of treatment” at the Vatican’s Bambino Gesù Hospital. Giannina Gaslini children’s hospital in Genoa also offered care free of charge. A military plane, equipped with oxygen and necessary medical supplies, still stands at the ready to whisk the child to Rome. There are no barriers to Alfie’s treatment outside the judiciary. Alfie has been granted Italian citizenship; the nation’s foreign and interior ministers have appealed for his transfer; and Italy’s ambassador to the UK threatened to charge Liverpool officials with “the homicide of an Italian citizen.”
The judges’ intransigence is morally unfathomable. Courts have sometimes intervened when parents deny their children medical treatment but, in this case, they have prevented parents from seeking care aimed, by definition, at saving a child’s life. Even if the procedure fails, it may yield breakthroughs that researchers apply to future cases of this exceedingly rare condition.
One wonders how Europe arrived at the point that its courts seem willing to provoke an international incident in order to deny a child medical care.
At least three developments influenced this environment.
Citizens have endowed the government with the aura of omniscience. Judges, who presumably have limited medical expertise, have played the determining role in a dispute between two teams of medical experts: one which believes continuing treatment is immoral and another which disagrees. Yet if the issue were truly clear-cut, Italian medical providers would ostracize both hospitals and their staff for offering to torture a child.
This reputation for petence has allowed the government to arrogate to itself prerogatives properly belonging to parents. Indeed, this disturbing trend has been on display for decades across the West, urged on by apocryphal proverbs that child-rearing is an undertaking best suited for a whole village and nationally televised pronouncements that citizens “have to break through” the “private idea that kids belong to their parents, or kids belong to their families, and recognize that kids belong to munities.” Cases such as Alfie’s and Charlie Gard’s should provokeskepticism that the State will extend warmer ties of affection to children than those naturally engendered by parenthood.
Further, government denial of medical treatment underscores the problems of any national health care system. An ethical health care market offers parents greater choice, improved services, and the freedom to select medical providers who share their mitments. But constricted prices and markets stifle innovation needed to cure, or even diagnose, rare conditions like Alfie’s. An artificial price structure and perverse economic incentives trigger an annual NHS “winter crisis” that has bled well into spring and threatens to drag on until August. Rationing encourages health care bribery and favors the powerful at the expense of the weak; no one believes that if, God forbid, the Duke and Duchess of Cambridge’s as-yet-unnamed newborn boy suffered from this condition, treatment would be denied.
We recognize these meta-problems converging to threaten the life of Alfie Evans, whom Western Civilization recognizes as the bearer of equally inestimable human dignity.
“We, Alfie’s parents, have the right and responsibility to make decisions to save him and move him to a hospital who will honour those decisions. Give Alfie his rightful chance at life!” his parents asked.
They deserve a legal system that respects the primacy of the family, judges who honor the value of life, and an innovative and independent medical system that empowers parents to leave no stone unturned in saving their precious children.