Gard-ing Hope and the Loss of a Child¶
Maybe there are people on Earth who live in holes and are unfamiliar with Charlie Gard, the eleven-month-old baby boy, born with a rare genetic condition known as Encephalomyopathic Mitochondrial DNA Depletion Syndrome (MDDS). The same baby boy the judge ruled should ‘die with dignity’. His parents are continuing their fight to bring him from the United Kingdom to the United States for an experimental treatment that admittedly may not do much for him, or has a small chance of helping in any meaningful way when quality of life is concerned. From my understanding, they have two more days (7/12) to show “new and powerful evidence” that the treatment might work. I hope the boy is given a chance regardless of how slim it may be.
I know where these parents are coming from. I was in their shoes for five days—the longest five days of my life. My initial fear, on top of her passing away, was her passing without a name. It seemed like even more of an injustice at the time. No baby should pass away without a name, repeated in my head. We decided on Madison Nichole, the perfect name for an angel.
With each passing day in the hospital, my despair was replaced with more hope. I memorized each medicine she was on and how much she was receiving. I spoke with the nurses and doctors at length. They would take care of her until she could come home. Home. The place she never got to go. I remember coming home on the fourth day to the other kids and my oldest asking, “When is she coming home?” He was only six at the time… but I could see the sadness in his face when I shook my head and said, “She’s not coming home (yet? Maybe I said yet).”
The next morning we got the call. You see, we didn’t stay every night at the hospital. I was in for the long haul and I had so much faith in the doctors. Her mother had just had a baby and needed rest. And we had other children. So many ways to justify it. Had I known she had five days I would have never left. So, back to the call… the doctor said we needed to come quick. I remember questioning the doctor over the phone thinking the doctor was overreacting. How foolish.
Her lungs were too underdeveloped to survive because of the infection. That’s what they told us. They could keep her on oxygen, but the sacs that filled with oxygen would explode and she would pass in more pain. The only other option was removing her from all of the machines and allowing her to pass away in our arms. That’s what we did. It was only the second time we got to hold her without the machines present. Her mother held her, and I held them both. That was the last hour of her life.
Had I known the outcome, and I were given a choice, I would have given my life a hundred times to save her. I would have done anything fathomable, assuming it wouldn’t have put her in unnecessary pain. And so I say let these parents exhaust all options before having to do what I did. Before Charlie passes away in their arms. Maybe, just maybe, he will get to go home…