Little Charlie Gard died on July 28, 2017, a week shy of his first birthday. He was a precious baby who had Mitochondrial DNA depletion, an extraordinarily rare genetic disease that causes progressive brain damage and muscle weakness. This particular disease has only been diagnosed in 15 other people.
At birth, Charlie appeared to be healthy, but within a few months, he started losing the ability to move his arms and legs. His parents, Connie Yates and Chris Gard, sought the best possible medical treatment for their son, and Charlie became a patient at London’s Great Ormond Street Hospital, one of the world’s leading pediatric hospitals
As the disease progressed, Charlie’s parents disagreed with the doctors regarding treatment. They researched the disease and possible treatments and got in touch with an American doctor, Michio Hirano, at Columbia University Medical Center, who was willing to try the radical, untested therapy treatment, nucleoside bypass therapy.
Yates and Gard launched a fundraising campaign and raised $1.7 million to pay for this experimental treatment. However, in Britain, unlike the U.S., if a family disagrees with medical professionals about care or life sustaining treatments, the decision is ultimately made by the courts.
In a five-month legal battle that went all the way to the British Supreme Court and the European Court of Human Rights, the judges ruled that Charlie, who was blind, deaf, could not move, or breathe on his own, should be removed from life support.
Unless you have lost a child, it is impossible to understand the stress Charlie’s parents suffered during his short life or the grief they are experiencing now following his death after so fervently seeking out and hoping for a miracle.
It’s also hard to imagine how difficult it was for Charlie’s doctors to tell his parents that there was nothing more that could be done to save him. It must have been an excruciating blow for them when the court refused to let them take Charlie home to die. Instead, he was sent to a hospice facility.
Some may think that was cruel. However, the doctors believed that even though Charlie wasn’t able to move, he might have still been able to feel, which means he could have been in pain. They didn’t want him to suffer needlessly.
The Difficulty of Making End-of-Life Decisions
I have grieved for Charlie’s parents. At the same time, I have admired and respected the physicians and judges who made incredibly difficult decisions, which some may have deemed harsh and uncaring, based on what they believed would be best for Charlie.
Some might say this is a tragic event with no upside, but I disagree. As a society, many of us have become desensitized to the tragedies we witness on the nightly news from refugees who are fleeing their homes to escape famine and war, to families who have lost loved ones to suicide bombings, mass shootings, or senseless violence. We see these people on TV and think how horrible it must be for them, but in most cases, we feel powerless, and very few of us are moved to action.
The photo of little Charlie Gard, an adorable baby boy, who could not move, speak, or suck his thumb, touched people’s hearts. We identified with his parents’ agony and their fervent wish to save their child, and many opened their wallets and donated money to help them.
Undoubtedly, Charlie’s plight led to countless conversations within families and medical communities about accepting mortality––our own as well as our children’s. I can’t help but wonder how many parents gave thanks for their own healthy children and hugged them a little closer after reading stories about Charlie.
Surely thousands if not millions of people have talked about what constitutes quality of life, and they have thought seriously about their own choices. Perhaps they will even be motivated to complete their advance directives and save their families the agony of having to decide whether to continue or stop life support.
Connie Yates and Chris Gard made a valiant effort to save their son, and it’s unspeakably sad that they did not get the miracle for which they prayed.
I hope someday they will realize the impact Charlie had on others. For a short time, their little boy united people all over the world in love and compassion, including the pope and the president of the United States. Regardless of our political affiliations, our religious convictions, and our beliefs regarding life support, we were all unified in wanting what was best for Charlie.
In a world where it seems there is nothing but disagreement and conflict, Charlie made us think and feel, and he moved many of us to action. The fact that one small child could do that without opening his eyes or speaking a word, may in itself be Charlie Gard’s miracle.