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?

References:

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.

 

Trauma: Why Does There Always Have to be a Reason?

Many parents feel a significant amount of guilt and/or shame after going through a traumatic birth experience and the hospitalization of an infant. One of the most salient conversations I had at the NICU was with one of my sons' neonatologists, who told John and I to be gentle with ourselves. He said we would likely have thoughts, lots of them, desperately examining every detail of the days leading up to our babies' birth,  trying to figure out what we did wrong to cause my preterm labor. He was correct. In fact, we had already gotten started researching what it was that made us absolutely responsible for the traumatic birth of the babies. Because how could such a horrific and devastating event happen for no reason? Maybe it was something I ate at dinner, maybe when I moved that piece of furniture a few days ago. Should I have taken a leave of absence at work? Was I too stressed out? Moving. Life events. Did my pets somehow give me an infection? Maybe I wasn't mindful enough. We must have done something wrong.

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Traumatic stress, so it seems, often rolls into our lives hand in hand with guilt and shame. Guilt and shame are so common in the experience of traumatic stress that at one point they were considered as potential diagnostic criteria in the classification of post-traumatic stress disorder. Individuals facing other forms of traumatic stress also oftentimes take up the practice of self-blame in the aftermath ("what was I wearing that prompted him to assault me?"). So what gives? Why is it that when an individual goes through a traumatic experience, it's so common to then manifest shame, self-blame and guilt? And what do we do with that? Why is it so hard for us to sit with the notion that sometimes things happen for no known reason?

Psycho-evolutionary theory holds that an individual feels shame and guilt much in the same way an animal might, indicating to the community around them that they have been harmed and need help (Harman & Lee, 2010). So, maybe when we feel responsible for a tragic event, it's our unconscious way of "performing" our trauma for our community, exhibiting our remorse so that we aren't excommunicated. Fair enough, but what if shame and guilt are holding us back from functioning in our day to day lives? What then?

  1. Learn about your circumstance.

Chances are, there was nothing that you could do to prevent your birth experience from going the way it did. Nothing. This is a great article describing some of the most common pregnancy complications, and how despite how much progress has been made in the business of caring for premature or medically complex babies, the medical community still doesn't know exactly what causes these things to happen. Yes, there are risk factors that can lead to complications. However, most of these risk factors are not things that you can avoid. We often hold the assumption that the medical community has expert knowledge of all ailments we might face. Unfortunately, even though so much valuable research and progress has been made in preventing pregnancy complications, many elements are still little understood.

     2. Be aware of cultural attitudes that may be causing you harm.

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All too often in our society, the unexplainable is not accepted. I was shocked when reading through comments on articles about the World Health Organization's recently released infant mortality and prematurity statistics, to see that many individuals who had never experienced anything remotely like preterm birth had pert answers as to why they felt infant mortality is still an issue in the U.S., offhandedly blaming mothers and families for their own tragic circumstances. Try to shield yourself and your family from these kinds of attitudes, whether in the media or in your own community. When someone asks "What did you do that caused this to happen?", redirect them to the research that shows that you did nothing wrong. If that attitude persists, set a boundary with that individual to protect yourself.

     3. Develop a sense of loving-kindness towards yourself.

This is the tough one. How can we move ourselves from a place of guilt and shame to one in which we hold compassion for ourselves and what we are going through? One trick I learned through my own experience was to try and imagine myself from another person's perspective, even my babies' perspective. What might that other person see? Was I doing the best that I could given my current set of circumstances and the knowledge that I had? If I had known some way of preventing this event from happening, would I have done it? By looking in from the outside, sometimes your strengths and values become more apparent. When you start to see and identify your strengths and values, you will also start to develop the ability to grow loving-kindness for yourself. If imagining yourself through the eyes of another person proves to be difficult, start by using affirmations (it's simple to google free affirmations; peruse them and sort out a few that resonate with you). Simply repeat the affirmations either silently or out loud multiple times a day. It may feel alien or strange at first, but sometimes going through the motions of self-reassurance can jump-start the process to reaching the "real" thing.

     4. Promote loving-kindness of the self in your partner.

Your partner (or other individual who provides you with significant emotional support) will likely be mired in the same struggle with guilt and shame that you are experiencing, even if his/her struggle looks completely different from yours. When coping with a trauma together, try to be gentle with your partner. Remind them of their strengths or the things that you appreciate about them. Check in with them about how they are coping, even if it seems like you've already addressed all the issues together. In doing these things, you will set a precedent of support in your relationship, and create a space in which you can address the various stresses you're both facing.

Shame and guilt are oftentimes the uninvited guests to an already traumatic event. Allowing these emotions to take over can increase your risk for developing acute or post-traumatic stress disorders (Barr, 2010; Harman & Lee, 2010). If your sense of shame and guilt is so overwhelming that you feel powerless against it, it may be time to seek out counseling.

As our neonatologist continued in the conversation that day, he told us his NICU experience spanned decades. He told us that if the birth were our fault, he would surely tell us. He told us he almost never saw patients that had done something that "caused" their pregnancy complications. He told us that tons of research is being done to prevent this very thing from occurring. That if they could resolve preterm labor and other reproductive complications, that he and his colleagues would be unemployed. "Happily unemployed." His words resonated with me. In fact, for months I would deliberately replay what he said in my mind when I started to develop new theories of why our circumstance was all my fault. To this day, I feel gratitude for what he said.

 

References

Barr, P. (2010). Acute traumatic stress in neonatal intensive care unit parents: relation to existential emotion-based personality predispositions. Journal of Loss and Trauma, 15: 106-122.

Harman, R. and Lee, D. (2010). The role of shame and self-critical thinking in the development and maintenance of current threat in post-traumatic stress disorder. Clinical Psychology and Psychotherapy, 17. 13-24.

Leskela, J., Dieperink, M. and Thuras, P. (2002). Shame and posttraumatic stress disorder. Journal of Traumatic Stress, 15:3. 223-226.