We Editor’s Note: This editorial was updated at 2:15pm Eastern July 28 to reflect the announcement of Connie Yates, Charlie Gard’s mother, “Our beautiful little boy has gone. We are so proud of you, Charlie.”

 

Chris Gard and Connie Yates wanted desperately to find treatment or even a cure for their terminally ill 11-month-old son, Charlie.

When they realized that Charlie’s condition was beyond treatment, they simply wanted him to die in their arms in a private hospice after they could spend a few final days saying goodbye.

Instead, London’s Great Ormond Street Hospital and the courts decided the fate of Charlie Gard, even in his last moments.

On July 28, Charlie died at a children’s hospice, chosen by Great Ormond Street Hospital, after his life support had been removed the day before. Only a few days earlier, Charlie’s parents had ended their agonizing five-month-long legal struggle to move their son from the British hospital in the hopes of securing a breakthrough treatment.

In a July 24 statement that brought their legal odyssey to a close, Chris Gard and Connie Yates declared, “Mummy and Daddy love you so much, Charlie. We always have, and we always will — and we are so sorry that we couldn’t save you. We had the chance, but we weren’t allowed to give you that chance. Sweet dreams, baby. Sleep tight, our beautiful little boy.”

Charlie had been diagnosed with encephalomyopathic mitochondrial DNA depletion syndrome, an extremely rare condition. Earlier this year, Charlie’s parents had launched an effort to provide their son with experimental treatment developed by a U.S.-based medical specialist, after Charlie’s doctors concluded that further medical intervention would be “futile” and prepared to remove him from life support. As they sought U.S. treatment, Gard and Yates met strong resistance from London’s Great Ormond Street Hospital. British and European courts upheld the hospital’s position and barred the parents from taking their infant home.

After many months’ delay, a U.S. specialist was finally permitted to evaluate Charlie and informed the parents that their child would no longer benefit from the experimental treatment. The Gard family’s ordeal has sparked an unexpected international furor, pitting a grieving and determined mother and father against the British medical and legal establishment.

Initially, media outlets framed the confrontation as a choice between the parents’ insistence on heroic measures for their son and his doctors’ belief that further treatment was futile and inhumane. Yet that dichotomy failed to explain the situation when Charlie’s parents surrendered to the U.S. specialist’s prognosis that their baby’s condition was beyond treatment.

At its heart, the Charlie Gard case is more than a debate about end-of-life issues. When Pope Francis spoke out to express his support for the Gard family, he underscored a more fundamental point about parental rights, praying that Gard and Yates’ “desire to accompany and care for their own child to the end will be respected.”

Indeed, this heartbreaking saga serves to remind the public that the once-assumed principle of medical ethics — that parents decide what is in the best interests of their minor child — is under threat.

As the Catechism of the Catholic Church makes clear, such “decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected” (2278).

British and European judges allowed the doctors at Great Ormond Street Hospital, and not Charlie’s own parents, to decide the conditions of even his final hours. Great Ormond’s legal filing in July explained the strange logic behind this decision. “A world where only parents speak and decide for children,” the hospital said, “and where children have no separate identity or rights and no court to hear and protect them is far from the world in which GOSH treats its child patients.”

This sweeping statement suggests that parents cannot be trusted to put their child’s best interests first, and the courts must properly defer to the judgment of “experts.” But in the case of Chris Gard and Connie Yates, no evidence has been put forward that the parents’ desires would be injurious or burdensome to their child. In fact, questions have been raised about the suitability of the state-appointed lawyer who represented Charlie’s “separate identity and rights” before the court.

The lawyer, Victoria Butler-Cole, is chairwoman of Compassion in Dying, a sister organization to Dignity in Dying (previously called the Voluntary Euthanasia Society), which advocates for the legalization of assisted dying in the United Kingdom. According to the British newspaper The Telegraph, both organizations share the same executive leadership and administration.

Of further concern, the battle between Charlie’s parents and his physicians exploded into public view just as the British Medical Association (BMA), the nation’s largest doctors’ union, endorsed abortion on demand. The vote has sparked protests from pro-life physicians, and Parliament has yet to vote on this matter.

Meanwhile, Yates and Gard’s thwarted campaign to help their child has signaled another ominous development.

As bioethicist Wesley Smith wrote in First Things, “The refusal to allow Charlie’s parents to remove their baby boy from the hospital is an act of bioethical aggression that will extend futile-care controversies, creating a duty to die at the time and place of doctors’ choosing. And that raises a crucial liberty question: Whose baby is Charlie Gard? His parents’? Or are sick babies — and others facing futile-care impositions — ultimately owned by the hospital and the state?”

As euthanasia and assisted suicide make steady progress in the West, the family, long the sanctuary of life, will face fresh challenges. Just as Mary and Joseph were charged with the care and protection of Jesus, the Son of God, so ordinary mothers and fathers are responsible for defending the life and dignity of each human being they bring into the world.

In some tragic cases, this sacred responsibility will include painful decisions about a beloved child’s end-of-life medical care.

Chris Gard and Connie Yates, the father and mother who brought Charlie into the world, were right to fight to be the ones to hold their child in the final moments and to allow a passing with dignity and love.

“A person who is hanging between life and death,” Pope St. John Paul II said during an address to an international congress on the care of the dying, “needs a loving presence.”

May God welcome Charlie Gard into his loving embrace and bring his parents comfort and strength.