The shocking, horrifying case of Alfie Evans

If you haven’t been reading about the case of Alfie Evans in Great Britain, you have missed a truly horrifying story.

Alfie’s story shares a lot in common with the story of Charlie Gard — also of Great Britain — who was born with mitochondrial DNA depletion syndrome, an incredibly rare disorder that typically causes infant death.

In the Gard case, the medical practitioners and the parents fought over what was in “the best interest” of the child, with the doctors feeling that prolonging his life was pointless, and the parents wishing to try experimental treatments.

It is easy for us to coldly side with the doctors. They’re experts, after all, and if experts say there’s no hope, than there is no hope. If they say additional experimental treatments are pointless, than they must be pointless.

And in fairness, they are almost always right.

British toddler Alfie Evans is held by his mother Kate James at Alder Hey Hospital in Liverpool, England. (Alfies Army Official via AP)

Then again, sometimes they are wrong. Perhaps those treatments were unlikely to work, but so what? Down one road is certain death imposed by the United Kingdom’s National Health Service, and down the other is likely death, with perhaps the hope of some kind of miracle.

It is easy to coldly dismiss the parent’s desire to try something like that. It isn’t going to work, it is just prolonging the child’s life needlessly.

But ask yourself, if you have kids, a simple question. If you were faced with your child’s death, and you had even one-millionth of a fraction of a percent of a chance to do something to stop that from happening, would anything stop you? I know I would move heaven and earth for even the smallest chance.

Alfie Evans, like Gard, was born with a catastrophic neurodegenerative disorder. Evans, like Gard, was deemed “hopeless” by his medical caregivers, while his parents sought treatment in Italy to keep him alive in the hopes of some kind of eventual recovery.

Evans’ parents, like Gard’s, was denied every appeal to keep him alive by the courts, losing his final challenge this week.

But here’s where the case gets curious.

The court denied the parents’ ability to even leave the hospital, barred them from even taking him home — though they did just relent on that final point — and, perhaps most importantly, barred Evans and his parents from leaving the country to seek treatment in Italy.

This treatment, incidentally, would have come at no cost to anyone. The government of Italy granted Italian citizenship to Evans, and offered to fly him — at their expense — to a Rome hospital for his experimental treatment. They were literally begging the British government to let them take over his care, and seek a way to treat him.

Still, they were denied. Essentially, the government of the United Kingdom told Evans’ parents that their son must die, and if they disagreed with the decision, they were prevented by that same government from the ability to do anything about it.

Interestingly, when doctors finally removed the breathing and feeding devices, the 23-month-old, surprisingly to the doctors, refused to die and began breathing on his own.

Hours went by, and he was still breathing. Despite this, the doctors refused to even give him water or nourishment for six hours.

As I write this column, he is still alive, more than 40 hours later.

Britain likes to pride itself on being a “free country” yet its citizens are essentially held prisoner by their own government, unable to be afforded even the free exercise of movement, nor given the ultimate care of their child’s welfare.

Years ago, as the United States debated changes to its own healthcare system, the hypercharged political rhetoric of a few stopped us from having a real conversation on the severe, horrific drawbacks of government-run healthcare.

Figures like Sarah Palin used opportunistic language like “death panels” to portray the Affordable Care Act as a terrifying step toward eugenics. Gleeful left-wingers weaponized the term to ridicule critics of the bill as unthinking, scaremongering liars. Death panels, they said, were ridiculous, and the government would never act like that.

Yet, in places like Great Britain, you do indeed have decisions about life and death being made by panels of bureaucrats and judges, who not only deny an opportunity to continue to fight for the life of one of their citizens, but then also violate the freedom of its people to choose something else.

This is the ugly reality advocates of state-sponsored healthcare never confront — the implications involved in ceding this power to the state. Now, your health and that of your children is no longer your own, but rather it is a function of state interest, in the hands of actuaries, bureaucrats and judges.

And if you don’t like that, you can’t even leave.


Matthew Gagnon

About Matthew Gagnon

Matthew Gagnon, of Yarmouth, is the Chief Executive Officer of the Maine Heritage Policy Center, a free market policy think tank based in Portland. Prior to Maine Heritage, he served as a senior strategist for the Republican Governors Association in Washington, D.C. Originally from Hampden, he has been involved with Maine politics for more than a decade.