You Are Not Alone: Fostering Prematurity Awareness Around the Globe

Photo credit: World Prematurity Day

Photo credit: World Prematurity Day

My new post about global prematurity is up at Preemie Babies 101 today! In it, I interview Aissata Sacko, founder and CEO of Assistance to Maternity Centers of Guinea. Aissata shared some of her personal story with me (she was born prematurely in Guinea, and her daughter was a 27 weeker) and told me about AMC Guinea's mission to help create more of an infrastructure for Guinean hospitals to be able to handle premature birth more aptly. The connection between NICU parents, even so far apart from each other, is incredible. Check it out here! 

After the NICU: What Meaning do You Take with You?

After Elliott was discharged from the NICU and on quarantine, I was left with a lot of time to think. For me, having lost William and spending so many days bedside in the NICU with Elliott, it felt like my entire world had been scrambled into something almost unrecognizable in comparison with what it had looked like even months prior. Transitioning from the "survival" mode of everyday getting to the NICU, making medical decisions, consulting with doctors, nurses and therapists, working towards Elliott's various discharge goals and witnessing Elliott's progress to medical stability was difficult. I had gotten used to the fast-paced nature of the NICU, made friends with his nurses and doctors, become accustomed to the idea that every day could present a new challenge; I even had my favorite places in the hospital to get coffee or take a break from being bedside.

We shifted to a life of being at home on quarantine, adjusting to the day to day, getting used to troubleshooting issues that presented themselves on our own, spending precious alone time with Elliott and starting the process of mourning. All of the events of the past few months started to solidify in my memory, and I started to understand just how this story would profoundly change my life story. But what would that look like? Would this story transform our family into some kind of tragic example of loss? Would we fade away from our friends and family? Was there anything powerful we could take away from it, that, maybe, we wouldn't want to lose, even as painful as the experience was?

When Elliott was about six months old (three adjusted) the peace lily we had put in his room bloomed:

It bloomed in a pairing of two petals, uncommon for peace lilies, which normally  produce one white petal in their flowers.

It was a twin bloom.

When John and I saw it, we were astounded. We felt comforted by it, as if it was some kind of a signal that the earth knew what had happened, that what happened was not to be forgotten. To me, it was also a symbol that despite having gone through that pain, we had somehow been able to move forward. And though it wasn't the way we would have ever chosen to move forward, it had revealed different aspects of ourselves that maybe we hadn't ever noticed before, or seen as a strength. It reminded us that he would always be with us; that our time with him had changed us forever.

Post-traumatic growth is a newer idea in the psychological community. The premise is that after an individual goes through a traumatic or challenging life experience, they then, oftentimes, experience positive psychological changes (Tedeschi, R. & Calhoun, L., 2004). In other words, when you go through an experience in which everything you thought you knew or could rely on is somehow taken away, one oftentimes finds ways of coping with that experience by developing new beliefs or discovering inner resources that before that moment in time were not apparent. Recent articles have shown that, in fact, post-traumatic growth is often more common than the development of PTSD after someone goes through a traumatic experience.

The NICU seems to have the ability to burn away the things that perhaps seemed important in the past, but no longer hold meaning for parents. I don't know a single NICU parent who doesn't understand the very profound value, the gift, of being able to witness your child take a breath unassisted, or swallow without choking, or make eye contact even for a few fleeting moments. Things that for many parents, go (blissfully) without notice.

Oftentimes, for NICU parents, the love that we hold for our children becomes very "operational". In other words, it becomes a very deliberate act of noticing and interacting with our little ones. We go to the NICU, we make decisions and advocate for them, we learn how to participate in their therapies, and accept the problems that present themselves along the way. Love, then, is not just an idea that we have about our relationship, there are actions involved. Prior to having gone through the NICU experience, if you had asked me if I thought I could get through something as challenging, I likely would have told you that I couldn't. That I did get through it in itself is very powerful, and, for me, gave me a sense of just what parts of my sense of self would survive the NICU experience; and it was comforting to discover that it was love that survived it all. It was also awesome to see that my partner had that same sense, and that I could rely on him to carry on on the days that I couldn't.

Despite the pain and anguish of going through an experience that quite literally takes your breath away, perhaps in the survival of that, we find the parts of ourselves that are the most resilient. And I feel gratitude to my boys for having highlighted that for me with their fortitude and grace. Each year, around this time, I get reminded of it when I think to myself about the ways in which I want to move forward in the coming year.

To other NICU parents: what do you DO with the experience of having gone through the hospitalization of your baby? How does your experience make itself known in your day to day life? Have you ever been surprised at how this experience has changed your sense of self or your relationship with your little one(s)? Was there anything of value that you could find in the NICU experience?


Barr, P. (2011). Posttraumatic growth in parents of infants hospitalized in a neonatal intensive care unit. Journal of Loss and Trauma. 16, 117-134.

Spielman, V. & Taubman-Ben-Ari, O. (2009). Parental self-efficacy and stress-related growth in the transition to parenthood: a comparison between parents of pre- and full-term babies. Health and Social Work. 34(3), 201-212.

Taubman-Ben-Ari, O. & Kuint, J. (2010). Personal growth in the wake of stress: the case of mothers of preterm twins. The Journal of Psychology. 144(2), 185-204.

Tedeschi, R. & Calhoun, L. (2004). Posttraumatic growth: conceptual foundations and empirical evidence, Psychological Inquiry. 15(1), 1-18.