Commentary by Susan Brinkmann, OCDS

The death of 11-month-old Charlie Gard is not the end of the story of this little boy. His short life raised awareness around the world about the shortcomings of the medical system, the importance of parental rights, and why respect for human life must remain the most important factor when determining what is the best treatment for the incurably ill.

Charlie Gard passed away on Friday afternoon, shortly after a High Court judge ruled that the Great Ormond Street Hospital (GOSH), where Charlie was being cared for, was to remove his life support and move him to hospice care. He was suffering from a rare mitochondrial disease for which there is no cure, and died with his parents at his side.

After his death, Charlie’s parents issued a short statement, saying only that “Our beautiful little boy has gone, we’re so proud of him.”

Thus ended a months-long battle that pitted the parents and their wishes to do everything possible to save the life of their child against a hospital that gave up on the boy months ago.

In Charlie’s case, even though his condition was extremely rare, a doctor in New York and pediatricians from the Vatican’s Bambino Gesu hospital offered a glimmer of hope that he could be helped with experimental treatments. Naturally, the parents jumped at the chance to save their son and immediately went to court to fight for his life.

They ultimately lost, and were denied the right even to bring their boy home to die.

“Most people won’t ever have to go through what we have been through,” said Charlie’s mother, Connie Yates, just after the judge ruled against allowing the boy to die at home. “We’ve had no control over our son’s life and no control over our son’s death.”

For most parents around the world, the mere idea that they would not be permitted to do everything in their power to save the life of their child, even when they had the means to do so, is simply unacceptable.

Dr. Robert D. Truog, a physician at the pediatric intensive-care unit at Boston Children’s Hospital and the director of the Center for Bioethics at Harvard Medical School, told The New York Times that “Charlie’s parents were like parents all over the world — they were willing to do absolutely anything to save the life of their child.”

He added: “They were the victims, not the cause, of this tragic situation.”

Of course, the hospital, which received months of terrible publicity, was in full damage-control mode as the child’s end neared.

“We deeply regret that profound and heartfelt differences between Charlie’s doctors and his parents have played out in court over such a protracted period,” the hospital said in a statement. “We will never do anything that could cause our patients unnecessary and prolonged suffering.”

As heartfelt as their expressions might be now that Charlie is gone, GOSH came across as unnecessarily hard-hearted in their determination to discontinue Charlie’s life support, fighting for months to do so rather than giving the parents an opportunity to try experimental therapy at a time when some believe it might have proven helpful.

Instead, Charlie was left to languish in a hospital even after his parents raised enough money to try a therapy developed by Dr. Michio Hirano of Columbia University Medical Center in New York. Even if the therapy had not worked, it might have brought closure to the parents and perhaps even furthered research into new therapies for those suffering from mitochondrial diseases. But GOSH refused, and the fight wore on.

As the Times reports, the Gard case laid bare several issues. “Should parents or doctors or the courts have the final say in irreconcilable disputes over the treatment of sick children? And at what point should the limits of medicine be recognized and the parents of an infant be compelled to let go?”

They continued: “Biomedical ethicists said the case offered a cautionary tale of how a legal battle, scrutiny by the global news media and intractable differences between parents and doctors can spiral out of control in the social media age. Both the hospital and the parents in the Gard case dug in, their arguments playing out on Facebook and Twitter and capturing the attention of world figures including President Trump and Pope Francis.”

The case tapped into the health care debate in the United States, Dr. Truog said, and was being used by some to promote a money-driven health care system in which patients who have the means can pursue experimental treatments, even if the chances of success are slim.

But experimental treatments must be weighed against the benefits for society as a whole, he believes. In the United States, “no one can demand nonbeneficial treatments simply by claiming they are paying out of pocket,” he wrote in recent article on the Gard case in The Journal of the American Medical Association.

“It would be extremely rare for a hospital in the United States to admit patients for the exclusive purpose of receiving homeopathic therapy or unproven stem cell infusions,” he wrote, “regardless of how much the patient paid.”

But Dr. Hirano’s treatments could hardly be compared to alternatives that have been proven worthless, such as homeopathy and many of the stem cell therapies being offered by rogue clinics around the world. Hirano is a distinguished neurologist from a prestigious institution whose specialty is the treatment of mitochondrial diseases. Even though in the end, Dr. Hirano realized it was too late to help Charlie, there’s no telling if earlier intervention might have brought about a different outcome in this case.

Priest for Life founder, Father Frank Pavone, is hoping Charlie’s story will teach us all some valuable lessons, including governments and their health care systems.

“It is the legitimate goal of government to protect the rights of people. When bureaucrats take over parents’ roles, they trample on the rights of families and patients,” he wrote. “As we saw in baby Charlie’s case, it was fatal and it set dangerous precedent utilitarianism under the phony guise of compassion. As we discuss the healthcare in this country, may this serve to warn government officials to never go in that direction.”

He added: “Let it be a warning to all of us to never arrogantly presume somebody’s worth, value, or happiness. We must never ever look at somebody else’s circumstances or lives and arrogantly appoint ourselves as judge and jury on how valuable that life is or how happy they will be. It is not our part. For Matthew tells us, ‘Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father.’ There is no life too small or too weak over which God is not sovereign. May we have a good dose of humility.”

For now, Charlie’s parents are left to deal to pick up the pieces of their lives now that Charlie is gone.

“We are struggling to find any comfort or peace with all this,” Connie Yates said. “But one thing that does give us the slightest bit of comfort is that we truly believe that Charlie may have been too special for this cruel world.”

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