When the author and her wife learned their 18-month-old needed open heart surgery, it proved to be one of the most terrifying moments of their lives—and, to their surprise, uniquely life affirming.
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When I was told that my newborn had a heart murmur, I didn’t worry. I had been diagnosed with the same condition at birth.
When his pediatrician didn’t like the sound she was hearing during his 18-month check-up, I still didn’t worry. “It’s just the murmur,” I assured my wife, Sam. “We’ll take him to a cardiologist.” I had been through all of this. I told myself this would be a routine appointment.
But in retrospect, the minutiae of the day sticks out to me: My iced coffee sweating in my hand as the receptionist reprimanded us for being late. My wife’s angry whisper as she told me to watch my mouth. My little guy running down the carpeted hallway with me trailing close behind. When the doctor delivered the news that he had a congenital heart defect, Sam and I were genuinely shocked. Our baby needed open heart surgery.
Quinn was diagnosed with an Atrial Septal Defect—there was a hole in his heart. Suddenly, the rude receptionist warmed toward us. Then we strapped Quinn into the back of our Wrangler and sat together in the parking lot. Sam and I each called our families, and they reacted with surprise and stoicism. We hadn’t told them about the appointment. No one was expecting this.
Memories of difficult times can be bittersweet. Flecked with warmth, they can be a necessary reminder that we are loved. Many years ago, a car accident left me emotionally drained and physically impaired. It was not easy for me to give myself over to the care of others, but I had no choice; I let my loved ones wash me, feed me, and, simply, show up for me. Embarrassed, I ached with gratitude as I received the help I needed but for which I would have never asked. Now I feel a fondness for that two-year span during which I underwent multiple surgeries. They provided a time of rest that many of us do not regularly afford ourselves, a time to simply exist with the people I love. Life’s traumas often leave us with nothing to do but be together.
As I reflect on the time during which Sam and I prepared for Quinn’s surgery, my memories are less fraught than one might imagine. Our worries became secondary as we busied ourselves with the details. Loved ones asked how they could help, but no one could do this part with us. It was all medical, scheduling follow-up appointments with various doctors, and making difficult decisions. Sam and I had to figure out what kind of procedure would work best for Quinn. We ruled out less invasive options like transcatheter repair, which would close the hole with a flexible tube. We momentarily considered an experimental surgical procedure that would repair the defect without opening up our son’s chest. Every appointment led to the same conclusion: The safest and most effective choice for our child was open heart surgery. We kept our loved ones in the loop, following up after each appointment, and explaining every decision.
The first time we met the man who would become Quinn’s surgeon, we felt immediate relief, an instant understanding that our child was in capable hands. Still, anything could go wrong. I can’t recall details from the weeks or days leading up to his surgery. We were on autopilot, focused on what needed to be done, trying to ignore the fear rooted firmly in our chests. Our only job was to keep Quinn healthy. We took him out of school. At a long day of pre-op appointments, he was poked and prodded and eventually, like any normal toddler, he broke down. A rare upside to having a small child facing major surgery was his ignorance of what lay ahead. An ice cream cone after a blood draw had him licking sprinkles off his nose as Sam and I squirmed with the reality that this was really happening.
We opened up to our surrounding community. We told more friends, co-workers, and clients what was going on. Mostly, we downplayed it. Yes, open heart surgery. Yes, of course we’re scared. Oh yes, we know everything is going to be fine. A few days before surgery, we shared the news on our family Instagram page. We had always been forthcoming with our followers about the joys and pitfalls of same-sex marriage, fertility treatment, and the hardships of parenting. It can’t hurt, I thought, to welcome their prayers and thoughts and love for our boy.
We’d arranged to meet my parents, and Sam’s dad and her Godmother on the morning of Quinn’s surgery, but somehow seeing them standing there, waiting for us before dawn, I felt my anxiety shatter into countless pieces—I wasn’t alone in my fear. There was some for each of us to take on. We were surprised to find a friend of ours already sitting in the waiting room. She had driven for over an hour, bringing bagels and coffee. She couldn’t stay, and didn’t want to impose, but she did want to give us each a hug. Food is our love language—and hers—but physical touch is powerful. It was grounding to have people that we could literally hold on to.
Finally, it was time. Only Sam and I were allowed to walk Quinn into surgery. He was hungry now, and tired. “You always get to break down,” I had told Sam earlier that morning. “Now it’s my turn. This time you have to be strong.” The woman who guided us down the brightly lit hallway hadn’t met us before, and she didn’t seem to understand that we were both Quinn’s moms. She turned her back to me and helped Sam into her PPE. She didn’t even offer me a hair net. Quinn was crying as the doctors took him from Sam’s arms and laid him on the table. I felt helpless and frozen. A nurse placed a mask over Quinn’s face as he cried out and reached for us. In an instant he was asleep, and we had to turn away and leave him there.
Sam sobbed as we backed out of the room. The woman tended to her as I stood away, thinking, I gave birth to that child. I wanted to yell at the woman to get away from my wife. Instead I stood there, numb, until Sam was ready to walk through the double doors with me. “I said it was my turn to break down,” I grumbled. Sam laughed out a sob as I wiped snot from her cheek.
I was almost grateful that I had been mistreated by a member of the staff. It gave me a little spark of anger, which felt better than fear. I also had the luxury of loved ones waiting for me, people with whom I could cry, whose hands I could squeeze, who did know that Sam was my wife, that Quinn was our baby.
I had never been on this side of surgery—certainly not as a parent. I quickly learned that waiting is agony, but having our family there made the impossible feel possible. Like my useless days following my own past surgeries, there was nothing for us to do but be together. Hours slinked past as we nibbled sandwiches, fielded texts and phone calls and relished every update. When Quinn was settled into his bed in the pediatric intensive care unit (PICU), we were finally allowed to see him. Our beautiful baby was a heap of bandages and wires. We shuddered with sighs of relief.
I recall the anxiety of the time, but am struck by the warmth of my memories. We lived in that PICU room for the better part of a week, during which time friends and family came in and out all day, every day. Toys piled up. Balloons crowded the corner ceiling. Stuffed animals, blankets and books shared Quinn’s bed. Visitors brought him lollipops and they brought us coffee. Sam and I felt perpetually grimy, in spite of daily showers. We felt exhausted, sleeping in a room that was never quite dark and never quite quiet. No one seemed to mind. They hugged us anyway. One friend even snagged paper cups and snuck in a bottle of wine, which we sipped while propped on the window sill. When we finally wheeled Quinn’s stroller out of the hospital, a clutch of balloons was secured to the handle bar. It took a few tries to close all of his gifts into the trunk, and when we rolled into our driveway 90 minutes later, there were care packages piled by the door.
We walked inside to a warm home. There was soup on the stove. Our house had been professionally cleaned. It almost felt like too much, to be cared for this generously. People we had never met sent cards and gifts.
Someday bits and pieces may come back, but for now—like his baby teeth and chubby cheeks—Quinn’s own memories of this time have disappeared. As they return, they will surely be shaped and colored by our own—the photos and our stories, the video of him playing with a toy truck in his hospital bed. There were two other babies in his PICU room, neither of whom had regular visitors. I can appreciate that every family’s circumstances are different, but my heart ached for those babies.
Quinn, so strong as he endured so much, was lucky to be surrounded by people who love him, every step of the way.
If he ever asks how we got through it, I can tell him that it was never a question of whether we could do this. We knew we would be brave for him, and show up for him, even when it was scary or difficult. Our friends and family did that for all three of us in the days before, during, and after Quinn’s open heart surgery, and I will be forever grateful for how they cared for us.
The experience taught me a valuable lesson about showing up for people. Even when it’s inconvenient, even when you don’t know what to say, even if you don’t have anything to give—just be there. Be the person that someone can hold onto, reach out a hand that they can squeeze. I can say from experience that it will not be forgotten. Nearly five years after Quinn’s surgery, I look back with relief, and a little longing, too, for a time when we allowed ourselves to be wrapped up in the embrace of our loved ones.
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