Fifteen years ago, doctors delivered our first baby seven weeks early to save his life. But that wasn’t on my mind the other day when I went scrounging through the linen closet in search of my youngest son’s pair of backup glasses, the ones I’d stashed away — who knew where — for safekeeping. The glasses had disappeared, but I did find a stethoscope, the one I brought home from the hospital 15 years ago, the color of its tubing long faded to gray.
It wasn’t the only thing in our household to have gone gray in those intervening years.
I pulled the stethoscope from the shelf and let the rubber swing loose from my hand. I smiled, unexpectedly calm, even while my brain called up images of holding the chest piece to my infant son’s heart, counting, listening, praying and promising myself I wouldn’t check again for at least five minutes. Maybe two, but I’d try for five.
The morning I delivered him, I’d been in the hospital for two days while a perinatal team tried to slow his heart from where it was stuck at 240 beats per minute. Just moments before he was born, doctors could detect the manic rhythm of his still-racing heart, but he’d gone otherwise unresponsive. My son was dying.
I flashed to a memory of lying on a gurney, watching the red brick of the hallway rush past while a nurse I’d never seen before snapped a paper cap on my head and tried to calm me. “Don’t worry,” she said. “The doctor can have this baby out in less than 90 seconds if he needs to.”
Ninety seconds. One number on the list I would, for years, recount to doctors and nurses like a catalogue of old standards: 90 seconds; 33 weeks; 240 beats per minute; 5 pounds, 10 ounces.
There would be more numbers to come.
3: The number of times the neonatal team would restart his heart.
5: The number of colleagues our son’s pediatric cardiologist would call, around the country in the middle of the night, to consult on what he would later admit was “the most frightening case I’ve ever had.”
20: The number of nights we would have to leave our son behind in the neonatal intensive care unit because at some point we had to go home, feed the dog, gather the mail, take a shower and try to sleep.
96: The number of hours I’d wait until I’d be allowed to touch my child for the first time.
All of this, and my husband and I hadn’t even had the chance to complete our birthing classes.
Like thousands of NICU parents every year, our son’s birth was more nightmare than fairy tale. We were surrounded by loving family and friends, and yet we were desperately alone.
There is an isolation that falls on people whose trauma strikes fear in the hearts of others. Every day, presumably well-intentioned people said things such as, “I’m sure he’ll be just fine,” and “Don’t worry — it’s amazing what they can do for preemies these days.” They didn’t mean to minimize our pain. They were trying to say something helpful, offer a ray of hope. Problem was, there would be no making me feel better until I could hold my son, take him home and have the doctors tell me, again and again, that he was safe. Even then it would be many years until I could believe them.
When my son was born, I couldn’t see anything but fear and helplessness disguised as my child but tucked away in a plastic cube, wearing a diaper too big for a doll. When I looked at my baby, I saw trauma — tubes and needles and monitors. There he was, all of him, right in front of me. But I couldn’t take my eyes off the screen that transcribed his cardiac rhythm into please, God, please, please, please keep him steady digital peaks and valleys.
I don’t recall even a moment of joy. Maybe it was there. Maybe I let others feel it for me. But I don’t remember anything except my own bottomless panic.
Flash forward and my husband and I are in the middle of raising three boys, all of them healthy, each of them distinctly their own selves. They mow the lawn and shovel the sidewalks while dad supervises. Meanwhile, I’ve established a career writing about everything from barbecue to boardrooms. My son’s birth, though — that’s the one story I’ve never successfully captured. I’ve recovered emotionally, thankfully. With lots of help, I learned to quit blaming myself and triggers such as the stethoscope in the back of the closet no longer send me spiraling. The panic attacks and night sweats are mostly gone.
Then a few months ago, two dear friends experienced a trauma eerily similar to ours. Only this time, they didn’t get a happy ending. Their child died.
For my husband and me, witnessing the depth of their pain was as awful as it was familiar. As we mourned for our friends, I realized how much of our story I’ve never shared. When people ask, I tell the highlights — the numbers and the what happened — but never the tougher stuff. I hold our story close. I don’t want to share. To open up is to make myself vulnerable again. It exposes the part of me that’s still bruised from feeling minimized in the midst of my pain.
But right this minute, new moms and dads are welcoming their son or daughter far too early. They’re frightened, the doctors are worried and the NICU team is on alert. Grandparents are doing the praying and the crying. Neighbors are doing dinner prep and letting the dog out. Somewhere our story is just beginning. All of it. The numbers and the what happened and the desperate, isolating fear.
According to the March of Dimes, 1 in 10 infants born in the United States each year is premature. Although doctors, nurses and researchers have made miraculous advances in the prevention, treatment and care of premature babies, many of the children born before 37 weeks have lifelong physical and neurological troubles, including compromised physical development, learning, communication and social skills. Many live with ADHD and anxiety, or with neurological disorders and autism.
My son carries with him a handful of these markers. But amazingly, his heart — the misbehaving scoundrel that started the whole mess — got its act together and hasn’t acted up since the day he came home.
But I am not the same. My husband is not the same. Our marriage is forever changed. Even our son, though healthy, will live with the resulting complications of a traumatic premature birth.
Recently, during a quiet moment together in the car, I told him I was trying to write about his birth. “I’m struggling,” I said. “How can I possibly distill everything that happened?”
He shrugged. “Wish I could help you, Mom, but I don’t remember any of it.”
I laughed. “That’s okay, bud. I wouldn’t expect you to.” Then I reached out and touched him, because I could, because he lets me and because I’ll never get enough of the feel of my son.
This is the magic in our story. This is why it’s important to share preemie histories like ours. It’s my duty to tell those frightened parents about the rest of us — all the NICU families who’ve gone before them, feared for their children, walked through the nightmare and risen again. When I tell you it will be okay, I mean it. Not tomorrow, but someday. That’s a testament that is so much bigger than words.
Gretchen Anthony is the author of Evergreen Tidings from the Baumgartners, forthcoming from Park Row Books this October.
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