Supporting parenting in the neonatal intensive care unit (NICU) is one of the most challenging but rewarding aspects of patient care in neonatal nursing. As nurses, we are uniquely positioned to offer support, advice, and guidance in the transition to parenthood. Yet, sometimes parents perceive us as “gatekeepers” to their newborn rather than facilitators of access. As the neonatal nursing community works to improve care for all patients, parenting in the NICU is one element of care that needs to remain at the forefront. Consider the following experience of a parent, who has been on “both sides” of the incubator as a NICU nurse and then a NICU parent.

OUR STORY

After 12 years working in high-risk perinatal care and level III NICUs, I found myself on the other side of the bed, watching my child received the same care I had provided countless times to other babies and their families. Instead of guiding a parent through one of the most challenging and difficult experiences of their lives, I was the one now in need of support and guidance. My daughter, Aurelia, was born in August 2022 at 27 weeks 5 days of gestation, after a placental abruption, which began at home. On the night Aurelia was born, I woke up to a significant amount of blood that quickly increased. I immediately sensed what was happening. As my husband was speeding to the hospital through overnight construction traffic, I was acutely aware of what laid before us. If we both survived, our whole family was facing months of uncertainty, anxiety, and separation. I wept for my baby, myself, my husband, and my 2 other children at home. How were we going to do this?

I delivered Aurelia at the hospital where I worked for 10 years—with much of that time spent in their large, high-acuity level III NICU. Although I was no longer working in that unit, I called the NICU charge nurse from the L&D waiting room and explained our situation. Even though she did not know who I was, I told her to prepare for a STAT 27-weeker and I needed to know which provider was on call. She cautiously gave me details about the delivery team and assured me they were getting a space ready for my baby.

The nurse in labor and delivery triage kept telling me everything was going to be okay while trying to find Aurelia's heart tones. After the third time, I asked her to stop saying it was okay. I knew this was a preterm abruption and nothing about this situation was okay. I needed to hear my baby's heartbeat and get to the OR as quickly as possible. I needed to know she was still alive, and we both needed to be saved. I thought of my 2 boys at home and wanted so badly to be able to see them again. I wanted my baby to survive despite all the potential challenges ahead of her.

OUR PRIVILEGE

I want to pause here and take a moment to acknowledge the immense privilege I carried with me into our NICU stay. Not only did I have experience and knowledge of the NICU environment and the medical care necessary for my baby's survival, but my positionality as a White woman with adequate employment and good insurance. We had a good support network providing childcare so that my husband and I could be in the NICU daily. Additionally, I had already established care with a therapist, who was also a NICU parent, as we embarked on our own NICU journey. I had so many moments sitting at Aurelia's bedside thinking about my struggles and wondering if I was struggling this much, despite my privilege, how much more challenging it must be for other families. If it's this hard for me, I can't imagine how other families did it.

During the first few days of our hospitalization, I tried to be “easy” parent. Because of my experience, I knew we had a long stay ahead of us, and I didn't want to develop a reputation. I accommodated the nurses, thought of their tasks and schedules before my own, and felt the constant tension of wanting to interject when it wasn't the way I would have done it. This all changed for me after Aurelia's first bath.

I coordinated with the nurse to be present for Aurelia's first bath at 3 am on her fourth day of life while I was still inpatient. That night, I fell deep asleep for the first time since she was born, and I woke up in a panic at 03:09, knowing immediately that I might have missed my window. I rushed to the NICU as quickly as I possibly could, considering my postpartum, postoperative recovery. I arrived at her bed at 03:14 to her nurse putting away the plastic bath basin. She turned to me and said, “We said three o'clock.” Those 4 words completely shattered me, and I felt an intense wave of grief flood me. I sat down at her bedside and cried the hardest I had ever cried in my life. It was in this moment that I realized being the “good parent” or “easy parent” was not meeting my needs nor my daughter's. Aurelia may have been taken out of my body, but here in the NICU, I felt like she was not mine. I was at the mercy of the nurses, doctors, respiratory therapists, and countless other people overseeing her care. I was outnumbered and terrified; all my previous experience did not prepare me for this moment.

IMPORTANCE OF PRESENCE

Missing Aurelia's first bath put everything into perspective for me. I was/am her mother; that's who she needed me to be, her advocate. I would do whatever it took to be heard and supported. One of the most frustrating experiences during her NICU stay was the constant reminder to “just be her mom right now.” When I heard comments like this, what I understood the team to be saying was, “Don't ask too many questions. Just sit quietly. I'll let you know when you can interact with her.” The irony is that while they were telling me to be her mother, there were more moments when the opportunity to be her mother was not possible or taken from me. It is a mother's job to bathe, hold, feed, and care for her infant, but in the NICU, those activities often require permission: to be given permission from the “gatekeepers.” The conflict between my personal and professional understanding of the situation further complicated my traumatic experiences. I knew as a professional that there were legitimate reasons for some of the responses I was given, but as a mother, there was nothing any of the nurses could say that I would find acceptable. I was trying to be her mother, yet it was so hard! There were so many competing interests: how do I integrate my knowledge as a mother and my experience as a nurse?

So, I decided to be myself and lean into the duality of my role as Aurelia's mom and as a NICU professional. I was authentic and honest with the team. I started with transparent communication despite it being perceived as negative. Some offered a sympathetic ear and a shoulder to cry on, others seemed to take it personally and tried to appeal to my sense of “knowing better.” When offered unsolicited advice, I would remind them that my experience was unique and valid. The times that I felt the most supported as her mother were when I was able to express my authentic emotions about what was happening—the everchanging mixture of pride, fear, love, anger, and gratitude I felt at any given moment. A few colleagues were consistent sources of support. They provided meals, acknowledged the disappointment, stress, and grief we were experiencing while also celebrating every weight gain, skin-to-skin session, and successful eating experience. I will forever be grateful for their kindness and support.

IMPORTANCE OF PARENTING AND PRESENCE

Parental–infant separation is inherently traumatic. Human beings are social beings that need human connection to thrive and so the effect of being separated from and not able to hold your baby after birth is a common source of trauma reported by former NICU parents, which also increases their risk for developing posttraumatic stress disorder.1 When an emergency and the need for life-saving care disrupts the bonding process, the sequela of events that follow can negatively impact parents and infants. Postpartum Support International2 lists NICU admission as an example of trauma and risk for developing postpartum posttraumatic stress disorder (P-PTSD). Symptoms include “intrusive re-experiencing of a past traumatic event... flashbacks or nightmares, avoidance of stimuli associated with the event ... persistent increased arousal (irritability, difficulty sleeping, hypervigilance, exaggerated startle response), anxiety and panic attacks, feeling a sense of unreality and detachment.”3 The American Psychiatric Association estimates 17% of parents experience P-PTSD or birth-related trauma—a number that only includes those who meet clinical criteria for diagnosis as many more parents experience P-PTSD symptoms.4 But what many former NICU parents will tell you, is that even after leaving the NICU, the NICU never really leaves you. NICU parents remain at risk for developing P-PTSD up to a year after their infant's discharge.1,5 Every noticeable difference from your baby gets mentally tagged and then the worry sets in wondering if it was connected to their birth. Is this her normal or is it because she was born early or in the NICU? These lingering questions make it even harder to process the trauma exposure from the NICU. I have always been a strong advocate of trauma-informed care (TIC) and have integrated TIC principles into every class I teach as a neonatal clinical nurse educator. I remember telling my therapist during one of our virtual sessions, as I sat in my car in between care times, that I felt like I was disassociating—like I was watching a movie about the NICU as if it was happening to some other family. Again, all my professional experience and training couldn't have possibly prepared me for this traumatic experience, even though I knew what to expect from the environment. Even the most clinically benign NICU admission can be traumatic, and processing that trauma takes time.

During our NICU journey, I experienced the effects of toxic positivity, which I had not recognized before. Toxic positivity is defined as “dismissing negative emotions and responding to distress with false reassurances rather than empathy.”6 When people are uncomfortable or are unsure of what to say, they often rely on vague or empty statements. The team kept telling me over and over to “be grateful,” “this will all be over soon,” or “at least she's growing/doing well/not requiring a lot of respiratory support.” My reaction to these comments highlighted how dismissive they were and reminded me of all the times I said similar things to other parents. For example, during her first and only septic workup, I was told “Hey! It's her first one. It's not a NICU stay without a workup or two. I'm surprised it hasn't happened already” and while I understood this sentiment as a professional, as a parent, it shattered my emotional composure. It was one of our worst days in the NICU, and these comments did nothing to validate or acknowledge the worry and fear we were feeling.

In short, I learned language matters. If nothing else changes in your clinical practice after reading this or other articles, other than removing the phrase “at least” in your communication with parents, then that will be a win for me. Even though I was deeply grateful that this was only her first workup and that she was getting the right care at the right time, I was still upset about the pain my daughter was feeling and concerned about implications of the results. Multiple things can be true at once: parents can be grateful, disappointed, scared, and angry at the same time. Statements that are dismissive of parents' emotions and concerns can further exacerbate their traumatic experience and distrust of providers. Given the focus of individualizing care for infants, we must also acknowledge and individualize the emotional support provided to parents and not be dismissive of their experience.

VALIDATION AND EMOTIONAL SUPPORT

In healthcare, we often focus on the short-term outcomes. Nowhere is that truer than the NICU. We celebrate every discharge and pat ourselves on the back for a job well done of getting a baby home. We reminisce about former patients and enjoy seeing holiday cards and getting updates at return visits or reunions, but so much more could be done to connect us with the lived experiences of our patients and their families as they navigate the transition to parenthood in an unfamiliar environment. The care we provide today potentially impacts every one of their tomorrows. Why wouldn't we want to support their family's transition to home in the best way possible? In sum, Aurelia's 75-day stay in the NICU was clinically uneventful. I owe that in part to the high-quality care she received, but I also believe our consistent presence in the NICU as her parents played a protective role in her outcomes. Validation fosters resilience and resilience mitigates the impact of trauma. My hope in sharing my experience is to empower more NICU professionals to choose to foster resilience in our patients and their families.

We hope that this special series, Parenting in the NICU, offers new insights, challenges conventional practices in the NICU, and sparks a desire to promote care that values and validates the parent's role in the care of their child during a NICU hospitalization. Let's meet parents where they are at, knowing the lasting impacts our choices have on their transition to parenthood.

–Jessica Barnes, MSN, RN, RNC-NIC, NPD-BC
Trauma Informed Professional
Grady Memorial Hospital, Atlanta, Georgia
–Ashlee J. Vance, PhD, MA, RN, RNC-NIC
Center for Health Policy and Health Services
Research, Henry Ford Health, Detroit, Michigan

References 1. Schecter R, Pham T, Hua A, et al. Prevalence and longevity of PTSD symptoms among parents of NICU infants analyzed across gestational age categories. Clin Pediatr (Phila). 2020;59(2):163–169. 2. Postpartum Support International. Postpartum post-traumatic stress disorder. https://www.postpartum.net/learn-more/postpartum-post-traumatic-stress-disorder/. Accessed September 23, 2023. 3. Accortt EE, Cheadle AC, Dunkel Schetter C. Prenatal depression and adverse birth outcomes: an updated systematic review. Matern Child Health J. 2015;19(6):1306–1337. 4. American Psychiatric Association. Maternal mental health: a brief look at the impact of birth trauma. https://www.psychiatry.org/news-room/apa-blogs/maternal-mental-health-and-birth-trauma. Published 2023. Accessed September 23, 2023. 5. Malin KJ, Johnson TS, Brown RL, et al. Uncertainty and perinatal post-traumatic stress disorder in the neonatal intensive care unit. Res Nurs Health. 2022;45(6):717–732. 6. Princing M. What you need to know about toxic positivity. https://rightasrain.uwmedicine.org/mind/well-being/toxic-positivity#. Accessed September 23, 2023.