NICU Parents: A Secret Society?

I remember the first time I walked into the NICU. When I was approved to go, my husband walked with me, showed me the hand sanitizer, and instructed me about the various policies about cleanliness. We walked in to find our tiny babies, who were on opposite sides of the full unit. Fluorescent lights glared onto the nurses, parents and their tiny charges, highlighting the dark circles under the parents' eyes and reflecting off of the plastic isolette that housed each baby.

It felt as if a sense of dread filled the room, which was full of the sound of beeping alarms. I saw the red and green lights indicating each of my sons' vital signs, the equipment that was attached to all of the tubes and wires in their bodies thrumming loudly beside them.  I pressed my hands against the plastic of their cribs, afraid to touch my own babies and, at the same time, aching to reassure them that I was there.

The overwhelming sensory stimulation that surrounded me was jarring, and soon enough would become absorbed as unnoticeable in my daily reality. I looked at the people around me, my new community, and swore that I saw others who, like me, had tears welling in their eyes, reflecting the lights that would never dim.

For all of us, this environment would be our babys' home for days, weeks, and sometimes months. This was the NICU. 

Prior to going into preterm labor, I had never even considered that prematurity was a risk. I knew that having twins was a risk factor, but I knew no preemie parents, and had heard no stories of preemies. I hadn't known anyone who had had an especially traumatic birth or a medically complex baby. I had no idea. The night after I gave birth, I researched premature birth to the best of my ability, and found out that one in every eight babies born in the US is born prematurely. I discovered the March of Dimes, and read stories about these tiny warriors and their families. I realized that we were not alone.

The parent lounge in our NICU was sort of a ghost town; not that it was empty, but that oftentimes we silently walked past each other, each quietly dealing with the daily medical ups and downs of our babies on our own. Although we all knew that each one of us was contending with perhaps the biggest struggles we would ever face, there wasn't much regular communication. When times were tough, and perhaps we most needed support from parents going through something similar, paradoxically, the last thing most of us wanted to do was to leave our babies alone in the NICU so we could talk with others. What felt like the invisibility of our circumstances made everything that much harder to shoulder, and our inner emotional experiences of the trauma seemed all the more "abnormal". 

Many parents describe the NICU as a kind of "secret society": a world that, prior to their own experience, was mostly invisible to them. As their babies stabilize or are discharged from the hospital and parents start to reach out to others that have gone through similar circumstances, they find themselves appreciating even the smallest of milestones, or suffering some of the greatest setbacks with a community that has a strong and compassionate understanding of what each other is going through. Unfortunately, due to the traumatic circumstances of having a baby in the hospital, in addition to the added isolation of quarantine after discharge, it can be challenging for NICU parents to have a chance to connect with one another.

What was your experience of other families in the NICU? Have you made connections with others in the preemie parent community since your baby's stay in the NICU? Are there any ways in which preemie parents can become more "visible" to the world around us, and if so, what is it that we need to say? I also get curious as to whether fathers are even more isolated by the NICU experience than mothers, and if there are any ways for fathers who have gone through this to more effectively find/construct their community?

The Silent Struggle: Mental Health and the NICU

In becoming parents, we oftentimes accept the silent assumptions that are made by our culture of what that's supposed to look like. An "ideal" parent, for example, seems to live in a blissful state of sacrifice, made happy by the sheer existence of their child, doing their best to take on their responsibilities according to whatever parenting technique may be in vogue at the time (see the book "Our Babies, Ourselves: How Biology and Culture Shape the Way We Parent" for some great writing on this subject).

Cracks in our ability to do that, made visible in mixed company or in the necessary public outings we sometimes have to make, can be harshly judged by strangers and other parents alike, as if our take on parenting is expected to be at top notch regardless of our surroundings or the context. Paradoxically, depending on your audience, different values will be upheld, and surprisingly, people oftentimes feel little need to censor their comments

The NICU parent, by virtue of their baby's traumatic entrance to the world, has a unique set of expectations placed upon them, in addition to a unique set of stresses. I remember when my son had terrible colic symptoms after discharge, which caused him to cry for numerous hours a day every day for months, of feeling like I wasn't grateful enough to have him home, that I was taking his health for granted, that I shouldn't feel depressed or anxious because, after all, he was out of the NICU. What else could possibly be as serious as that?  The depression, the haunting memories of the NICU that often flared up over the course of his entire first year-- how could I let those things overshadow the fact that he survived, that he was with me, that at any moment I could hug him? The fact that we were on quarantine to prevent infection, keeping us away from any kind of meetup groups or any kind of regular support from other parents didn't help matters much.  The guilt and shame that had accompanied his NICU stay carried on throughout his first year, in the form of my own expectation for myself that I should be happy and grateful, that struggles with emotional challenges were selfish or pointless. 

The NICU parent has to contend with the very real effects of trauma long after the discharge paperwork for their baby is signed. It's suspected that a staggering number, between 21-23%, of NICU parents have symptoms of PTSD. It's been found that amongst NICU dads, late-onset PTSD is common, cropping up sometimes as long as 6 months after the baby is home from the hospital (as a result, PTSD amongst NICU dads is underreported and difficult to measure). For moms and dads, untreated emotional trauma can wreak havoc on their ability to connect with their child or with each other well into the first few years of their child's life, and sometimes beyond. The very harsh experience of witnessing your child fight for their life can have profound influence on one's emotional health, and too often, no space is made for parents to grieve the experience, to put a name to what they lost, and to integrate that into their lives. Compounding that experience is the fact that NICU parents also have to deal with the very real threat that their child may have disabilities or health issues related to their prematurity or the medical issues that led to their NICU stay. 

As such, the NICU parent is not only held up to the expectation to be blissfully happy with their circumstances (sometimes, as it was in my case, by themselves), but they're contending with very serious, very real issues due to the fact that they were faced with an unpredictable, challenging, and in some ways emotionally devastating circumstance. With an implicit cultural assumption that parenting should be a joyous thing, too often we are silenced, and prevented from speaking to the struggles we may be contending with privately, afraid of the dark shadow that something like "mental health" might cast over our experiences. 

In resisting this silence, it becomes evident how powerful it can be for NICU parents (and parents in general!) to speak to the struggles they've had in parenting after discharge, to give a voice for others who may be too frightened to express it. In honor of Mental Health Awareness week, I'd like to make this a safe space to share your struggles as a parent, where you've gotten to with it, and if there has been any thing that's given you reprieve. Have you connected with other parents yet? How have you healed from your NICU experience? How would you like to see things change for others struggling with the same thing?