I’m still grappling with the heartbreaking news that little Charlie Gard was removed from life support and died while his grieving parents kept vigil. It was a couple weeks ago that I first saw a headline about the gravely ill British baby. My breath caught as I read the caption, “Court rules. No hope for Charlie Gard.” As I read on, the compelling story reached out and grabbed me by the windpipe. My son’s name is Charlie Gerd. Gard-Gerd. Separated by a measly vowel, a mere letter. And yet these Charlie’s are more than worlds apart.
My Charlie Gerd is a thriving, eight-year old boy who lives in the United States where his parents, my husband and I, maintain the power to make all important medical decisions for him. We get to decide, as his God-given guardians, in the event of a terrible illness, how far we would go to save his life. Charlie Gard’s parents, however don’t have that freedom.
Instead, the British government gets to tell them what is in the best interest of their own flesh and blood. It’s not a suggestion. It’s the law. In socialized medicine, they pay the bills so they call the shots. The Gard’s were told “no” when they tried to gain experimental treatment in the U.S. from a doctor who offered a small chance at a better life for Charlie. They even raised the funds to pay for it. When time had run out, after a series of resounding, legal “NO’s,” their final wish was to have him die in his own home. They were told “no” for the last time. Charlie Gard died in a hospice, his defeated mother and father, nevertheless at his side.
This story has been so difficult for me. As a parent, I can’t imagine the overwhelming feeling of impotence of being told you can’t take an outside chance on your own son’s survival. And in his last moments on earth, you don’t even get to determine where he will die. I weep for his mom and dad who battled over the fate of their little boy. They fought valiantly, but as in any heavy-handed drama, where the aggressor holds all the money and the power, the victim is silenced. “There, but for the grace of God, go I.” My son is Charlie Gerd. My son is Charlie Gard. The only difference, a vowel.