(FILES) In this file photo of April 05, 2018 a handout picture released by Action4Alfie operating the facebook group alfiesarmy and the Save Alfie Evans website on April 5, 2018 shows seriously ill British toddler Alfie Evans at Alder Hey Children's Hospital in Liverpool.
The parents of terminally ill British boy Alfie Evans were to appeal on April 25, 2018, a decision preventing them from going to Rome for treatment following high-profile interventions in the case from Pope Francis and the Italian government. Toddler Evans, who suffers from a rare neurological disease, had his ventilator support removed late on April 23, but has continued breathing independently for more than a day. / AFP PHOTO / Action4Alfie / Action4Alfie / RESTRICTED TO EDITORIAL USE - MANDATORY CREDIT "AFP PHOTO / ACTION4ALFIE " - NO MARKETING NO ADVERTISING CAMPAIGNS - RESTRICTED TO SUBSCRIPTION USE - DISTRIBUTED AS A SERVICE TO CLIENTS

ACTION4ALFIE/AFP/Getty Images
PHOTO: ACTION4ALFIE/AFP/Getty Images
(FILES) In this file photo of April 05, 2018 a handout picture released by Action4Alfie operating the facebook group alfiesarmy and the Save Alfie Evans website on April 5, 2018 shows seriously ill British toddler Alfie Evans at Alder Hey Children's Hospital in Liverpool. The parents of terminally ill British boy Alfie Evans were to appeal on April 25, 2018, a decision preventing them from going to Rome for treatment following high-profile interventions in the case from Pope Francis and the Italian government. Toddler Evans, who suffers from a rare neurological disease, had his ventilator support removed late on April 23, but has continued breathing independently for more than a day. / AFP PHOTO / Action4Alfie / Action4Alfie / RESTRICTED TO EDITORIAL USE - MANDATORY CREDIT "AFP PHOTO / ACTION4ALFIE " - NO MARKETING NO ADVERTISING CAMPAIGNS - RESTRICTED TO SUBSCRIPTION USE - DISTRIBUTED AS A SERVICE TO CLIENTS ACTION4ALFIE/AFP/Getty Images
Now playing
00:38
Terminally ill toddler Alfie Evans dies
PHOTO: CNN
Now playing
04:37
Keilar calls out Tucker Carlson's show: Partisan junk food
PHOTO: MyHeritage
Now playing
01:01
Watch old photos come to life using AI
PHOTO: CNN/Getty Images
Now playing
06:46
McEnany says she expected 'peaceful' rally on January 6. Keilar rolls the tape
Now playing
01:26
No, Tom Cruise isn't on TikTok. It's a deepfake
PHOTO: ABC's "Jimmy Kimmel Live
Now playing
02:02
Eddie Murphy, Arsenio Hall reunite in 'Coming 2 America'
PHOTO: Courtesy AirlingRatings.com
Now playing
03:06
Virgin Atlantic CEO: We support Covid vaccine passports
Now playing
01:19
Warren proposes wealth tax: 'It's time for them to pay a fair share'
Now playing
01:43
Marriott CEO: Vaccinations are 'the key' to travel recovery
Now playing
01:23
'There should be no threats': Biden's message to union-busters
Ashley Vanderbilt Former QAnon believer
PHOTO: CNN
Ashley Vanderbilt Former QAnon believer
Now playing
07:40
Former QAnon believer shares bonkers conspiracy theory about Biden

Editor’s Note: O. Carter Snead is a professor of law, director of the Center for Ethics and Culture, and a concurrent professor of political science at the University of Notre Dame. The views expressed here are solely his.

(CNN) —  

Imagine the following scenario: You are a new parent and your baby – less than a year old – begins exhibiting worrisome symptoms, including cognitive delays and eventually seizures. You take him to the hospital for evaluation, and a series of tests proves inconclusive. Your baby continues to decline to the point that he requires life-sustaining measures, including artificially assisted food, fluids, and ventilation.

O. Carter Snead
PHOTO: University of Notre Dame
O. Carter Snead

Eventually, the doctors tell you that your child is suffering from an unknown neurodegenerative disorder and they cannot do anything for him. He will be permanently disabled. Moreover, he will be forever dependent on life-sustaining measures, unable even to breathe for himself.

The doctors tell you that his brain is so compromised that he likely cannot see, hear, or communicate. He is probably unaware of his surroundings. They describe him as being in a “semivegetative” state. But while, ultimately, his brain degeneration will take his life, he is not dead.

You love your baby and detect a personal presence in spite of his grave disabilities. So you decide to take him from this hospital to seek alternative treatments, or failing that, just to continue to care for the child he is now, for as long as he is with you. But you are told that you may not take custody of your sick child. By operation of law, it is the state, not you, that determines his best interests and what treatment he is owed. And its conclusion (announced in a judicial proceeding) is that, because your child’s disability will render his life so poor and bereft of meaningful benefits, it is in his best interests to die.

Accordingly, the state orders that his life-sustaining measures be withdrawn for the very purpose of ending his life. Your desperate objections are rebuffed as merely the product of irrational emotion. Police are deployed, protests ensue, and the hospital staff switches off his ventilator.

Is this some fictional, dystopian, totalitarian nightmare? Sadly and shamefully, no. It is the reality of the modern-day United Kingdom – a nightmare from which the parents of toddler Alfie Evans cannot awaken.

Little Alfie Evans has recently passed away, but the struggle over his treatment provoked a worldwide conflict over parental rights, how to care properly for the seriously disabled, and the appropriate role of the state in such intimate and vexed matters. What it revealed is that the law of the UK is in desperate need of revision to make room for the profoundly disabled and their loved ones who wish to care for them, despite the judgment of others that such lives of radical dependence and frailty are not worth living.

Alfie was suffering from an apparent neurodegenerative disorder that physicians have thus far been unable to diagnose, associated with severe epilepsy and resulting in devastating cognitive impairment. They were convinced that he would never recover higher cognitive functioning nor be restored from his state of profound dependency and reliance upon life-sustaining measures. However, according to the UK High Court’s published opinion, there was no evidence that he was suffering or in pain. And even though it seemed likely that his condition would eventually take his life, the court noted that the “medical consensus” was that “the high quality intensive care that Alfie is receiving at Alder Hey could ‘sustain him for a long time.’”

The heart of the problem is that, according to the UK courts’ interpretation of the Children Act of 1989, a life of permanent disability and dependency, whether long or short, is not worth living. The UK High Court “root(ed)” its opinion in the ethical guidance of the Royal College of Paediatrics and Child Health, which asserts that “it is no longer in the child’s best interests to continue (living)” in those cases “where the severity of the child’s condition is such that it is difficult or impossible for them to derive benefit from continued life.” Because of his disability, Alfie’s very life was deemed no longer beneficial to him. And therefore it was declared illegal to keep him alive.

This decision reflects a profound, indeed lethal intolerance of dependence and disability. But it is even worse than that. Just as in the Charlie Gard case, the courts here effectively terminated the rights of Alfie’s parents, forbidding them to seek transfer to other facilities that wished to care for Alfie. Both Pope Francis and the Italian government pled for Alfie’s life, going as far as to make him an honorary Italian citizen and offering air transport to a pediatric hospital in Rome. But the UK government refused.

What began with a hospital’s deadly policy against a child with apparently permanent disabilities ended with a shocking totalitarian intervention by the state, annihilating his parents’ rights in order to ensure Alfie’s demise.

Get our free weekly newsletter

Contrary to the predictions of some of the medical experts on whom the court relied, Alfie continued to breathe and fight for his life in the absence of artificial ventilation for more than four days until he passed away.

In the wake of this most recent tragic case, let us hope that the UK government changes its laws to give parents the freedom to care for their disabled children and, most importantly, turns away from a perfectionist conception of “best interests” so hostile to imperfection, disability, and dependence that it mandates the death of those who are not suffering nor imminently dying simply because their lives have been judged by able-bodied strangers to be no longer worth living.