Dear parents in the neonatal intensive care unit (NICU),
I’ve been where you are. More than once. First, as a preemie baby whose life was undoubtedly saved by the NICU, and twice again as a mom. I know firsthand how difficult the NICU journey can be. I also know the ups and downs of life after a baby leaves the NICU, because I’ve spent 30 years living life after my own 10-week stay in the 1970s, when I was born 12 weeks early.
September is “NICU Awareness Month,” a month dedicated to honoring the NICU babies, families and professionals who work there. Without a doubt, the NICU can be a scary place for the parents and families of babies who need the unit’s care — but it’s also a place of miracles and saving lives.
And when you’re caught up in the routines of tests, beeping machines, or counting down to the next precious few minutes when you are allowed to hold one or more little ones, it can be hard to take the longer view — that this tiny child more than likely will have a happy, full and independent life. As a former 28-weeker, I live the longer view every day. This is what it’s like, looking back years later, as a NICU survivor.
Although not all babies who spend time in the NICU are born premature, preemies (meaning any baby born prior to 37 weeks of pregnancy) make up most of the NICU’s patients. Currently, premature babies include one out of every 10 infants born worldwide, and one out of every 9.6 births in the United States, according to 2016 statistics.
While the NICU is a scary place for parents unfamiliar with its machines and procedures, we graduates of the NICU know firsthand that modern medicine saves lives and gives second chances. We know, because whenever we ask our mothers or fathers to “tell me the story of when I was born,” we hear about the NICU, or the doctors and nurses whose round-the-clock care brought us back from the brink of death, or just how small we once were in comparison to our mother or father’s hands and forearms. Whether only slightly preterm like my daughters, or very preterm like myself, stories of the NICU entwine themselves into the tales of our first days and months living in the world.
Right from the start, we’re told we’re survivors, and this is undoubtedly true. Many NICU babies experience more blood draws, tubes and medical procedures in their first few days, weeks, or months than most people experience if they’re relatively healthy.
Although most of the time babies thrive after the NICU, some of us know this is not always true. Prematurity remains a leading cause of infant death in the first year of life, both worldwide and in the United States. I don’t talk about her much, but my fraternal twin sister brings this statistic as close to home as we shared our mother’s womb. Separated by different amniotic sacs, I never held her hand or cuddled up to her inside our mother, but she’s part of my family, and I grieve for the sister I never knew.
The majority of us, former preemies, thrive like ordinary children. We become toddlers who say, “No!” and elementary school kids who sing songs of joy or celebrate the poop emoji. We become teenagers who have our own very clear ideas of what to do with our lives, and adults who, in the vast majority of cases today, live full lives. The NICU seems to become a distant memory.
Surviving a life that got its start in the NICU doesn’t always feel heroic or triumphant. Watching my tiny daughters have their heels pricked for blood draws, seeing them connected to tubes and wires, or reaching out to them through the plastic casing of an isolette, felt like reliving a past I thought I’d forgotten. “Preemies are so strong,” my mother would remind me, thinking of my own tenuous infancy. “I don’t always feel like a survivor,” I thought then, as hidden memories resonated somewhere in my body, far below the level of thought. What seems like a distant memory is nonetheless present in scars on the body, or even more subtle scars in the psyche.
Although most of us thrive like our full-term peers, studies over the past few years continuously reveal that early birth can leave a mark on the personality of the formerly premature. There’s a distinct set of traits that characterizes babies born on the more vulnerable end of the prematurity spectrum, meaning earlier than 32 weeks of gestation. We “very” and “extremely” preterm individuals (as the World Health Organization calls those born between 28-32 weeks gestation, and before 28 weeks, respectively) are statistically more likely to be introverted and have a socially withdrawn personality; more likely to have symptoms of inattention that resemble ADHD; and more likely to internalize our worries than to react with anger, aggression or hyperactivity. We’re also statistically also more likely than full-term babies to have learning difficulties, processing disorders, and mental health challenges. Sometimes these differences cause obvious problems, but sometimes — like the slight hearing loss I’ve noticed since I was a child — these differences are much more subtle.
Despite these outcomes, we NICU graduates know the value of life, even at its darkest moments. We know that life clings, irrevocably and tenaciously, to life, because we’ve been there, even if we don’t remember the moments when our own lives were most in danger.
I also know that parents enduring the journey of the NICU may feel uncomfortable when congratulated on the birth of a tiny, early child. The NICU is one of those unsettling places where life doesn’t always work out the way we want it to. As a mother to two preemies, I’ve felt the sincerity of congratulations on the birth of a baby born too soon, coupled with the reality of my own emotions of hope, fear and guilt. There is little that feels worse for a new mother than standing over an isolette in the middle of her last night in the hospital, crying, apologizing to the tiny baby inside that I don’t know when she’ll be able to come home — and that I’m sorry she had to experience this, too. No wonder we parents focus on the positives: the little miracles they are.
But most of all, what I’d like to tell you about the journey of the NICU is that, “You’ll get through this, and on the other side, your child will almost certainly meet her milestones in her own way and time; she will almost certainly smile at you and love you and grow to have a happy childhood, a fully lived adulthood.”
Follow this journey on Acorn in the Oak.
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I'm a formerly very early preemie mom to two preemie daughters, exploring how early birth affects personality, neurodiversity, and the shapes our lives take. Find me at my blog, Acorn in the Oak, to read more!
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