The Unspeakable Spoken

For so long, Dustin and I were intimidated by the gravity of being parents. But eventually, we decided to take the leap. We quickly discovered that we were pregnant and were simultaneously terrified and excited. Like all soon-to-be parents, we prepared for our lives to be completely upended in the best way imaginable.

At first, it was all the normal pregnancy things. I was exhausted, I was nauseous, I was exhausted some more. However, during our 20-week anatomy scan a red flag appeared. By 23 weeks and 3 days we had a diagnosis. Our yet-to-be-named baby boy had Ebstein’s Anomaly – an extremely rare and serious heart defect which changed everything.

We spent so much time mourning our “loss of normalcy” in those early days after the diagnosis. It was serious, but as we researched and planned and learned… we realized that there were options out there. There were treatments. There were surgeries. The road ahead of us and our newborn would be long and hard, but it would all be OK eventually.

I’m a media producer by trade, and pretty quickly after we received the news my training kicked into full gear and I told Dustin I was going to “produce the shit” out of the situation. When I don’t know what else to do, I find all the things I can control and I try to bring order where there is chaos. We found specialists. We learned about complicated heart anatomy. We attended countless appointments. We prepared for a long battle. We connected with other heart families. We promised each other that our son would have the very best. It was proactivity at peak performance.

Eventually, our son Gibson James Miller, entered the world amidst organized chaos on March 30^th, 2022 at 12:11pm. He was 6lbs, 12oz, 20.5” long, with a full head of dark hair, just like his mom. Within 13 minutes of his birth, I watched as my newborn baby and husband were rushed away from our delivery hospital to the CTICU at Children’s Hospital LA across the street. I would be separated from them until I could recover and leave the hospital after my c-section surgery. That day ignited a whirlwind of highs and lows, of blackholes where time stopped and moments that moved at light-speed.

From the moment of his arrival, Gibson teetered on an endless rollercoaster of instability. He underwent 3 heart surgeries, survived 1 code blue cardiac event, received countless medications, lived on a heart and lung bypass machine called ECMO, experienced a massive brain bleed, and unfortunately, so much more. Things were so touch and go that they released me from the delivery hospital early so I could travel to CHLA to be present with my family, even though I had yet to fully recover from the operation.

And then suddenly and impossibly, on April 2, 2022, Gibson passed away in our arms, surrounded by those who loved him the most in the world.

Though every single breath and every single second of his life was precious, the reality is that to us, those mere seconds would never be enough. Not when you had planned on a lifetime together. A lifetime of baby giggles, sticky fingers, and runny noses. Of sleepless nights but countless days.

Despite all the risks and the warnings, it had never occurred to me that Gibson wouldn’t make it because we were doing all the right things. We sought the best help, had so many people praying, crossed our t’s, and dotted our I’s. I just thought it would be extra hard. That our path may be different than most families, but that it would ultimately be okay because we would be together.

But I was wrong. For months, we had prepared for every possible outcome and every possible pathway except for the one that we’re on today. The path where Gibson is gone. And it appears, that despite all the best effort, there is no way to order or control this type of chaos. There is no logic, no answer, and no reason. All I can do now is simply exist in its midst and try, whenever I’m capable, to be grateful for those precious few seconds that Gibson, Dustin, and I were together in this life. Though I know, more than anything else I’ve ever known, that they’ll never, ever be enough.