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?

What the World of Psychology Can Learn From the NICU Parent Support Community

My career as a marriage and family therapist has by far and large consisted of work within nonprofit residential placements. Beginning at a residential high school for teen moms and their babies, through a placement for women transitioning from the prison system and being reunited with their children, to a setting for homeless teens working towards their independence, each site had their own challenges, rife with the notion that each individual who stayed there would eventually be on their own. How could we, as service providers (and in most cases a short amount of time), help our clients get to a space of capability that they would no longer need our interventions, our support?

As I learned more about what worked for my clients, and saw what inspired them, I realized that the power of their connection with each other had far more longevity than what my teams and I could reasonably provide as therapists. By the time I worked with the homeless teens, I (and my incredible team) understood that by giving our clients power over their own outcomes, and providing them with a contained space in which they could learn about setting boundaries, coming up with solutions, and attending to their problems together, that the community that they built would be far more long-lasting and empowering than anything I could look up in the DSM and diagnose them with.

Given the current state of the APA and the horrific acts that have allegedly occurred (in addition to a few adjustments in the DSM-V), I feel now more than ever that community-building, empowerment and diversity are the most efficient ways to help individuals who may be struggling with the events of their lives. In community, we can work out solutions by ruminating together, problem-solving, and using creativity to shift the way we think about the different things affecting us, changing even the very language we use to describe ourselves, our families and our stories.

Fast-forward to my new life.  One of my most frustrating memories of my sons' hospitalizations was of the PICU when Elliott was close to discharge, but not quite there. It felt like years that we spent waiting for him to coordinate the suck-swallow-breathe reflex and learn how to eat on his own. I distinctly felt as if he was in a residential placement. There were similarities: we didn't choose to be there, nothing we had done had prompted it, and we had to answer to an authority for even some of the most basic of our connection with our son. We also struggled with the stress and pain that almost three months in the NICU had prompted, had a hard time knowing what to do that would help us get out of the circumstance, were triggered by things that reminded us of where we were. It felt like we were children, who had no expertise over our own baby and who had no power to change our outcome. 

After the NICU, I knew that there would be nothing to which I could professionally dedicate myself towards more than the cause of the challenges faced by NICU parents. I researched, I thought about it, and I came up with as many ideas as I could to try and reach and help the NICU parent community.

And then, I launched NICU Healing.

As I stepped into this new world, a world about which I felt unquestionably passionate, I realized immediately that I was in good company. I started to meet other service providers, doing similar things but oftentimes in different ways. I realized that many people who had gone through the horror of being faced with the mortality of their infants or, for nurses, their charges, had had the same realization that I did: that there was no going back, that helping others in similar circumstances not only created a path towards healing others, but also healing ourselves. It was incredible to see, and to feel part of this powerful community. Meeting other providers was by far the most stunning component of launching my website.

The NICU support world focuses on creating a community of equals. Although each one of us can offer different aspects of expertise, there are no "experts" prescribing what families need, or speaking from behind the curtain a la Wizard of Oz. People aren't ostracized if it takes "too long" to go through a specific aspect of their grief. They aren't stigmatized. They are listened to. They are understood. They are given contact with others who have faced something similar that may have wisdom essentially helpful to that specific circumstance. We share our stories, problem-solve together. Come up with ways of changing the system when it isn't working for our community. This world of parents, nurses, counselors, service-care providers, peer support experts, authors, has such diversity, that an individual or family that finds themselves lost in the NICU experience has a plethora of resources from which to pull: if one approach doesn't "fit", there are many others to choose from. Because both parents and nurses have experienced the trauma of the NICU themselves, there is an innate empathy and compassion for others' circumstances, an empathy that perhaps can't be manifested without that very personal understanding? 

Perhaps the world of psychology could benefit from adapting some of these more person-centered, empowerment-focused approaches to working with individuals struggling in their lives. Perhaps, instead of looking for ways of becoming the "expert" on other people's pain, service-care providers can instead focus on being able to "be" with their clients, to be truly aligned with them, to help clients to recognize their innate strengths and move forward with dignity and strength. Maybe, the notion of being "other", or different, doesn't serve our clients very well, and instead recognizing that we are all in fact a part of the human community and all of us have some experience of suffering can be that much more inclusive and change-inspiring. Maybe there isn't anything "sick" about needing help when facing difficult times.