Why do Parents of Preemies get PTSD?

The NICU is not a war zone - how can having a preemie cause PTSD?

NICU twins isolettes
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Understanding the way that trauma affects a person can be aided by having a working knowledge of how memory works. History helps too.

Stories help, in my opinion, the most.

I'll share my story with you: it happened about 8 months after my surviving 26-weeker twin son Elliott had been discharged from the NICU. I had to take him to the high-risk infant follow-up clinic at the hospital where he and his brother had stayed after I went into preterm labor.


I had been to the hospital every day, for hours a day, for three months when Elliott, and for a brief period, his brother William, were admitted. At the time my sweet boys resided in the NICU, I strategized ways of hiding my emotions from the parking lot attendant I saw daily. What was happening for me, surging deep beneath the surface of my shallow smile or blank stares as I exited that parking lot those three months? My world was shattering, my heart was crushed, loss was opening up beneath me in a shadowy abyss, I was angry, I was scared, I was devastated, our life had turned to the unpredictable, and, on one terrible day, I had been up all night with my husband holding my beautiful son as he was dying. And we were leaving the parking lot after he died. And parking lots don't make much sense at that point.

I thought nothing of the detour on that day, 8 months later. There was construction at the hospital, and instead of taking the typical path I normally drove to the follow-up clinic, which was at a different place on the campus of the hospital, I had to drive past the NICU parking lot.

We slowly pulled past. Then, as we continued to roll on in the unspeakably slow formation of cars, my emotions seeped out of control. I started to feel agitated. Tears came to my eyes, unbearable sorrow started to rule my chest and shoulders. I became hyper-aware of not letting Elliott notice as he slept in his rear-facing car seat in the back.

I didn't know what to do except to repeat the mantra "we are in the here, we are in the here, we are in the here" in my mind. I know it makes no grammatical sense. I looked at trees, counted cars, and breathed. "We are here. We are in the here. We are here." It was the only way I could keep myself from completely losing it emotionally while in stopped traffic at Stanford with my sweet baby sleeping just inches away from me.

Many NICU parents with whom I've worked or whom I met through our own NICU experience have reported feeling like they have PTSD (Post-Traumatic Stress Disorder). Some have been diagnosed with it by their therapists, others diagnosed themselves after researching PTSD on the internet (shout out to Dr. Google!), still others have been curious about it when their emotional well-being seems "off" after their NICU experience concluded: notably (and commonly), even years later. 

Here's a brief list of the terms we've used to describe this phenomenon, mostly in western culture, over the past century: "shell shock", "railway hysteria", "soldier's heart", "war neurosis", "exhaustion", "the effort syndrome", "combat fatigue", and, since 1980, "post traumatic stress disorder".


What do any of these terms have to do with being a NICU parent? How can it be that parents who go through a traumatic birth and the potentially prolonged hospital stay of their infant develop the same signs and symptoms of trauma as someone who's experienced war?

The phenomenon that we now refer to as PTSD originated after the First World War, when people started to notice that the soldiers who were coming back were not functioning in the way that they did prior to going to war. Soldiers often developed addiction issues, seemed distanced from their families, and got agitated often, sometimes for no apparent reason at all.

The things that prior to the war had been calming or grounding for these individuals suddenly had no healing power. After the Vietnam War, the number of soldiers coming back that were affected in this manner skyrocketed, and after Reagan's de-institutionalization movement in California in the 1980s, these traumatized individuals became visible residents struggling on city streets. 

Around the 70s and 80s, psychologists started to notice that victims of violent crime or assault, rape victims, and first responders exhibited similar traumatic symptoms. Eventually, they also noticed that youth exposed to abuse as children also showed these signs and symptoms, albeit in different ways. Psychologists, scientists, and neuroscientists started to research the ways in which trauma affected the brain. The American Psychological Association started to try and define a common disorder, so clinicians would have a clearer way of treating the condition. And in 1980, the term post-traumatic stress disorder was born. 

Memory research is somewhat dicey and I want to emphasize here that I am no expert. However, in the field of traumatic memory, some incredible research has recently come to the surface that can help us understand the way memories affect us after we go through a crisis. As humans, we are hardwired to remember the things that cause us harm or danger. The things that inspire fear in our brains are imprinted on an unconscious level as the MOST important things to remember. The unconscious parts of our brains, even our bodies, store these memories in the effort to promote survival moving forward.

While we are in the NICU with our babies, NICU parents are faced with life and death circumstances every day. We are thrust into a world that's difficult to understand: new people, new words, new decisions. Bright lights and beeping alarms remind us to continually check our babies, making sure they're ok. We are helpless to make any major interventions, and are put into a circumstance in which we have to trust others with our babies' care. The familiar phrase "it's a rollercoaster" is known by most NICU parents, who often know painfully well that you can't trust that things are simply "going well", but have to accept that at any moment, things can change drastically for the worse. Shame and guilt are common feelings for both moms and dads in the NICU, even when it's unwarranted. By virtue of necessity, our brains imprint the memories of doing these things very powerfully. In the moment we are with our babies in the NICU, in some ways it's actually in some ways logical to be anxious, hyper-aware, alert, and focused on the survival of our babies. 

What if I told you that variations on the emotions described above are all listed in the official medical diagnosis for PTSD? 

What happens with traumatic memory is that oftentimes the behaviors we develop to cope in the moment of a trauma become not usable, or sometimes even detestable, and we struggle when our brain resorts to using those coping behaviors long after the trauma has ended. We wake up in the middle of the night, paranoid about whether our baby is still breathing. Milestones become sources of anxiety, as any variation from what is expected could indicate something is awry in the baby's development. We become irritable with our spouses, the things we used to do become less enjoyable, we isolate ourselves from friends and family. In some cases, individuals resort to addiction in some form. What we thought would be the most enjoyable experience of life, having a baby, becomes in some ways a source of fear and unpredictability. 

Understanding the effects of traumatic memory can have a valuable place in helping us to heal. While I'm not an advocate for over-diagnosing or even using one term to describe the effects of different kinds of trauma (that manifests in people ranging from veterans to first responders to victims of violent crime to NICU parents to abused youth), it helps to know that you aren't alone when you're facing these very real challenges. In a beautiful way, understanding your trauma can free you to know it's ok to forgive yourself, and nourish yourself in an attempt to move forward.


If you'd like to learn more about PTSD in the NICU, and trauma-informed care, Kara is hosting a webinar for NICU parents and NICU caregivers this Thursday, March 3rd 2016. Click here for more information and to sign up for the webinar

About the author: Kara Wahlin is the mother of preemie twins as well as a licensed Marriage and Family Therapist in California. She created NICU Healing in order to bring her passion for healing NICU trauma to NICU families everywhere. 


Crocq, M.A. & Crocq, L. (2000). From shell shock and war neurosis to posttraumatic stress disorder: a history of psychotraumatology. Dialogues in Clinical Neuroscience 2 (1), 47-55. 

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

Van der Kolk, B., & Najavits, L. M. (2013). Interview: what is PTSD really? Surprises, twists of history, and the politics of diagnosis and treatment. Journal of Clinical Psychology: In Session 69 (5), 516-522. 

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