A NICU stay during the pandemic: Bridging collective and subjective loss

The neonatal intensive care unit (NICU) was the last place I envisioned myself during the COVID-19 pandemic. However, it was there I was afforded a glimpse into the intersecting realities of privilege and disparity both as they relate to maternal mental health and as well as a broader, more collective experience of loss.

Unexpectedly, my full term son was small for gestational age at birth. This set off a cascade of medical interventions beginning with a glucose test, which indicated low blood sugar levels and necessitated transfer to a Special Care Nursery for an infusion. There, an attentive nurse noticed small red dots on his chest, which, by that evening, prompted a full work up. A few hours later, I was woken by a nurse stating that the paediatrician on call wished to speak with me. A jolt of fear coursed through me when I was told that my son’s platelet count was severely low necessitating treatment in the NICU. Then there was the frightening blur of the paediatric ambulance and separation from my son (what if he got hungry on the way?) while I waited on my own hospital transfer.

As I spent more days in the NICU, I became attuned to subtle, and not so subtle, differences in experience. One of my roommates was a young mother with a premature infant. When the attending neonatologist came to greet her, the mother asked why the social service department had been alerted to her baby’s birth and who would help her with related paperwork. Though I was also desperately seeking answers to my questions (What caused his low platelets? Would there be long-term health effects? When could we go home?), my roommate’s questions seemed a world away from mine.

Then there were the unmistakable differences in the enforcement of ‘rules’ in the NICU. Unlike my non-white roommate, I was not reminded to pull up my mask or stay awake during skin-to-skin sessions in the recliner (and there were many occasions when I could have used these reminders). In contrast, some of the instructions imparted to me were to ‘stay in the present’ and avoid Googling, with acknowledgement of how hard this was to do. These differences communicated a subtle message that I was a known and trustworthy quantity.

There were also privileges inherent in my socioeconomic status that helped me navigate my time in the NICU. My commute to the hospital was seamless: a short drive in a car. No concern about timing bus transfers or having adequate fare. I had a home and a job that provided parental leave. I was not rushing out of the NICU to work. I had knowledge of and familiarity with the medical field. I did not have to communicate with doctors and nurses in a second or third language or wait while an interpreter was called. Despite all these privileges, this was a terrifying time.

It has since occurred to me that during the pandemic, much like in the NICU, we have all faced an experience of loss and uncertainty, though to disproportionate effects. During the height of COVID, many of my private psychotherapy patients spoke at length about their pandemic-related stress – college students spending semesters back at home with their parents, young adults abruptly cut off from their burgeoning social lives, and new parents navigating daycare and school closures. However, most had not lost their jobs nor their housing, nor a close family member to COVID. This was in stark contrast to the experiences of many of my patients in the public hospital where I also work. Indeed, the pandemic has laid bare racial, ethnic, and sociodemographic disparities in terms of risk of infection and disease severity (e.g. Magesh et al., 2021) as well as socioeconomic burden (Obendorfer et al., 2022).

After eight days in the NICU, my son was discharged. The cause of his condition was still unknown, though he was medically stable and across all objective measures doing well. I, however, was only beginning to process the emotional impact of this experience. Having an infant who requires a NICU stay is distressing. Not surprisingly, maternal anxiety, depression, and trauma is common (e.g. Staver, Moore, & Hanna, 2021) and has been further compounded by COVID-19 restrictions and related stress (Erdei, et al, 2022). In the weeks that followed our departure from the NICU, I questioned whether I had the ‘right’ to grieve my experience of loss – the loss of time with my son in the days following his birth, the loss of an imagined birth story, and the loss of perceived control around the circumstances of his birth. Afterall, my son’s length of stay was much shorter and his prognosis brighter than many of the other infants there and, as for my psychological well being, the resources and support were plentiful.

While much has been written about various interventions to assess and reduce parental distress associated with a NICU stay (for a review see Sabnis et al., 2019), I propose that at the core of clinical work with NICU parents is an invitation to grieve – no matter how objectively large or small the loss may be. This may be facilitated by helping parents acknowledge and perhaps take comfort in a collective experience of loss as it relates to time, expectations, and/or perceived control a NICU stay can entail while also recognising individual differences in experience. We are in a unique time in history having all experienced some form of loss vis-a-vis the pandemic. I propose that it is this collective experience, along with targeted interventions and resources aimed at addressing structural racism and health/socioeconomic disparities, that also helps bridge differences and, in our clinical work, care more fully for a vulnerable group of parents.