The tragic, shocking death of Charlie Gard

Did Charlie Gard just die? Or was he killed?

At first blush, it seems he just died. He had a terminal illness. No one could help it. So his death was tragic, but not appalling.

His parents beg to differ. Chris Gard and Connie Yates of West London are convinced much could have been done to save their son. And they were willing to do it.

Sure, their little boy was up against incredible odds. He had been diagnosed with mitochondrial DNA depletion syndrome, an extremely rare disease that causes progressive muscle weakening and brain damage, and typically leads to death.

Still, there was hope. Kids with a very similar form of the disease had responded well to an oral medication called nucleotide bypass therapy, with virtually no side effects. Charlie’s parents had raised all the money they needed for this treatment through a crowdfunding effort. Doctors in the United States were willing to try it with Charlie. All they needed was to transfer him.

Instead, the family remained in the United Kingdom. London’s Great Ormond Street Hospital (GOSH), where Charlie was being kept on a ventilator, refused to let him go. His parents fought the hospital for eight months in court trying to get him released. At every turn, they were denied. The hospital effectively held the baby hostage.

Did the hospital kill Charlie?

Why didn’t Charlie receive the treatment that might have prolonged his life? The hospital opposed it. In fact they applied to the court back in February to have his feeding tube removed, to withdraw his ventilator, and to provide him with palliative care only.

Their medical experts believed nucleoside therapy was futile. Charlie, they said, "should be allowed to die peacefully and with dignity."

Were they wrong? There appears to be some justification for their position. They weren’t obviously advocating euthanasia. The experimental therapy his parents wanted was extraordinary care. If Charlie was close to death, his life support, too, might be beyond the dictates of reason.

On the other hand, Charlie’s parents did not seem to want anything unreasonable. A July "Statement of the National Catholic Bioethics Center on the Charlie Gard Case" made the point that although extraordinary treatment is not obligatory, the church does not teach that one must reject such treatments, either.

The courts no less than the hospital believed they should act in Charlie’s best interests. Already in April, a High Court judge in London ruled in favor of the hospital.

Yet in the summary of his ruling, Judge Francis seemed to hesitate a bit. "Some people may ask why the court has any function in this process; why can the parents not make this decision on their own?" he wrote. "The answer is that, although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests."

According to the judge, parental responsibility goes only so far. When it comes right down to it, the courts are better able than the parents to determine the child’s best interests. Besides, power is invested in the courts, not the parents. So if the court wants to rule on the matter, who can stop them?

But should the courts really have decided this case? The Catechism of the Catholic Church affirms that parents are responsible for the physical and spiritual welfare of their children (no. 2228). If it is their duty, then it is also their right. When parents are unable to adequately meet the needs of their children, social institutions are called to help, but not in such a way that usurps their prerogatives (no. 2209).

What really caused Charlie’s death?

What, then, led the hospital to make the incredible argument that not only should they not provide Charlie with potentially life-saving treatment, but that no one else should either? And what led the courts to agree?

One good answer is socialism. Charlie was being treated in a country and in a hospital that practiced socialized medicine. And in such systems, the decisions made in the name of society tend to hold sway, while those of private individuals tend to be denied.

But perhaps a better answer – one entirely consistent with socialism but going beyond it – was that Charlie fell victim to a mentality that sees human life as possessing only conditional value, rather than intrinsic value.

Katie Gollop, who led GOSH’s legal team, aptly expressed this way of thinking in court in early July.

"There is significant harm if what the parents want for Charlie comes into effect," she told appeal judges, according to the UK’s The Telegraph. "The significant harm is a condition of existence which is offering the child no benefit." She added, "It is inhuman to permit that condition to continue."

Get that? In her view, human life itself is inhuman; death is humane. Absent certain conditions like health, human existence is an evil.

Charlie’s parents saw his life very differently. To them he was "a sweet, gorgeous, innocent little boy who was born with a rare disease," a baby they loved to spend time with even though he could barely move or even acknowledge their presence.

In a word, they saw him more as God sees him, as parents are naturally inclined to do.

In "Evangelium Vitae" ("The Gospel of Life"), Pope St. John Paul II warned of what he called a "culture of death," which consisted of a "war of the powerful against the weak: a life which would require greater acceptance, love and care is considered useless, or held to be an intolerable burden, and is therefore rejected in one way or another."

What is the "crime" of the weak in a culture of death? The pope tells us: "A person who, because of illness, handicap or, more simply, just by existing, compromises the well-being or lifestyle of those who are more favored tends to be looked upon as an enemy to be resisted or eliminated" (no. 12; my emphasis).

Parental rights and the Culture of Death

On July 28, Charlie Gard passed away shortly after being taken to a London hospice, where his life support was expected to be removed. If Charlie died of mitochondrial disease, then the circumstances of his death bear the marks of very powerful people who believed that Charlie was better off dead and saw to it that he died.

It also bears the marks of a culture characterized by people who are willing to put others to death – through abortion, euthanasia, infanticide, and the like – because they impede their attainment of pleasure, wealth, or even convenience.

Wherever the culture of death prevails, parents should be wary that courts and other institutions can and will decide the future of their children irrespective of their own reasonable decisions.

And only by rededicating ourselves to the grand project of building a culture of life – through prayer, sacrifice and action – can we reverse this ominous state of affairs.

Make no mistake: what happened in the UK could happen here. In a real sense, we are all Charlie’s parents. And we are all Charlie.

Dan Rossini is editor and general manager of the Catholic Voice. Contact him at djrossini@archomaha.org.