Neonatal intensive care is a gift we cannot overlook.
When November’s announcement by the CDC that our infant mortality rate remains abysmal did not make even the tiniest of dents in the post-election news cycle, my thoughts pivoted from the patient’s I’ve lost as a doctor who cares for critically ill newborns to Miranda July’s blockbuster summer novel All Fours. The backbone of this subversive book about an unnamed narrator’s wanderlust and revelations on perimenopause and reflections on kink and sexuality is “the great trauma” this narrator experienced when her child survived the “nightmare” of neonatal intensive care.
The main character’s brush with life-saving healthcare began when she rushed to the hospital in the middle of the night, eight weeks before her due date, aware something was wrong with her fetus. And, when she arrived, doctors and nurses took her concerns seriously. During an emergency C-section, her child, Sam, emerged from her body a “tiny but perfect paper-white baby. Was it dead? No one seemed to know or be willing to say.”
While the operation continued, she erroneously assumed, “From the silence in the room… things weren’t going well.” But despite the silence, things did go well for Sam, whose birth became a story of recovery, resilience and survival. Despite her child’s medical triumph, the blessing of competent and comprehensive medical care did not change the fear she felt during her transition to motherhood. This aspect of maternal-infant health—the pernicious effects on women that comes from absent societal discourse about how and why babies’ lives need saving—is exceedingly common.
Even though the vast majority of the 30 million babies yearly who require neonatal intensive care will survive because of it, many NICU parents, like the narrator in All Fours, are frightened when their children require critical care to survive. The experience of witnessing a loved one struggle (or perceiving a struggle) to survive unspools as PTSD for roughly half of NICU parents.
For much of All Fours, author Miranda July, whose own child spent time in a NICU, draws us deftly into the psychology of PTSD. Her narrator’s reaction to having had a rare pregnancy complication that “happens for no reason” is to chase a reason, as if finding an answer could prevent a recurrence or relieve the shame she felt for needing help to safely deliver her child (help millions of women need).
“That wasn’t going to be good enough to last me for the rest of my life. Even if this baby lived, I was going to need more reason than no reason,” writes July.
Even though the vast majority of the 30 million babies yearly who require neonatal intensive care will survive because of it, many NICU parents, like the narrator in All Fours, are frightened when their children require critical care to survive.
Throughout the novel, the narrator’s connection to her husband remains rooted in the bond they formed while their child was hospitalized. She spent years experiencing unbidden NICU memories (a hallmark of PTSD) as she went about her life, gripping her at random in places like the grocery store. These memories are, for her, simultaneously intrusive and comforting. She feels her whole self as “unknowable, unshareable,” because she did not perceive her birth story or her child’s hospitalization as mainstream. She scours the internet for online chat rooms, desperate to find other women whose births were like her birth. When the narrator ultimately makes a deep connection to another woman with a similar birth story, she finds her footing, but not before repeatedly expressing, “I can’t believe this happened.”
As I read, I could not help but wonder how to help parents like this narrator, the same parents I care for daily, feel in real time that NICU stories are a mainstream part of comprehensive reproductive healthcare. Stories of babies surviving in NICUs are often told as hard and heart-wrenching stories of sickness and suffering because they are colored by parental fears and anxieties, by the unnatural parenting environment, by the worry about what if and not by what ultimately happens. By and large, most babies cared for in NICUs do survive. If pregnant people don’t know how often these hard things happen—and that they typically have happy endings—they will never be able to find community in their experiences. Consequently, many women feel isolated when their babies are premature or need life-saving care for other reasons.
While the narrator feels isolated by the circumstances of her birth, the birth scene depicted in All Fours is very common. Despite Rivka Galchen’s observation in Little Labors that “literature has more dogs than babies,” similar scenes do appear in other books.
In Leslie Jamison’s memoir Splinters, she also describes the delivery of her daughter by emergency Cesarean section, after which her baby was in the corner of the operating room: “small and she was purple and she was not in my arms.” In Rachel Cusk’s A Life’s Work, her daughter, born by Cesarean section, is “borne off to the far side of the room, away from me, as if she were a light I fall deeper into shadow the further away she goes.”
In Mary Louise Kelly’s memoir, It. Goes. So. Fast., she likens her son’s time in the NICU to her time reporting in war zones. There are more similarities than differences between these deliveries because, contrary to the false narrative often perpetuated by the natural birthing movement, many women and infants require obstetric and neonatal care to survive.
My job as a neonatologist is to catch babies at C-sections, to ensure babies who are premature or distressed or otherwise sick take their first breaths by any means necessary. My colleagues and I save these sick babies’ lives at birth with the combination of quick thinking, intense focus, highly technical medical care and practiced skills. While healthcare workers give babies our undivided attention, parents across the room experience silence. Silence that may, as happened in All Fours, beget parental fear and trauma.
I know this fear myself, because this birth story was also my first birth story. When my older son left my body during my emergency C-section, he also did not cry. My husband told me he was outside my belly, blue and still. I knew precisely what medical care he required to survive. I screamed over and over and over for someone to tell me why my son wasn’t crying. I was desperate for reassurance that his doctors were enacting the requisite steps to revive him. What I got instead was sedation.
The terror I felt between screaming and sedation took years to abate. It lingered days later, when the obstetrician who performed my surgery told my husband he might experience traumatic memories from having witnessed my atypically bloody operation. (He did not). It lingered a week later, when I read my son’s medical record to understand what had happened to him. It crept its way into my mind as I caught baby after imperiled baby in emergency Cesarean sections like my own, and listened to women like me screaming like I had. I went to so many emergency deliveries that my synapses eventually got tired, and the trauma abated—but not before I told my story, not before I spoke about what I felt, what I’d feared.
As I read, I could not help but wonder how to help parents like this narrator, the same parents I care for daily, feel in real time that NICU stories are a mainstream part of comprehensive reproductive healthcare.
Because fear can dominate the narrative about sick babies, stories of survival can blend with stories of healthcare failing pregnant women and children. When these narratives blend together, it becomes harder to name injustice—and systemic interventions that may save lives are harder to enact. In the U.S. and around the world, systemic failures place Black and brown babies at an increased risk of dying the day they are born. One of many legacies chattel slavery left on modern maternal and infant health is the fallacy that Black women are responsible for their own children’s deaths and adverse outcomes.
In Tressie McMillon Cottom’s book Thick, her treatment as a Black woman differs greatly from that of Miranda July’s white narrator. Healthcare professionals fail to diagnose McMillon Cottom’s preterm labor because they do not take her concerns seriously when she reports what is happening to her body. She endures obstetric racism, mistreatment, and misogynoir only to deliver a baby that dies shortly after her first breath.
Even when race is not a factor, women internalize patriarchal beliefs that we can control our own pregnancy outcomes. Instead of talking openly about sick babies’ resilience, many women feel shame that they couldn’t protect their children from unprotectable problems. Adrienne Rich observed, in her 1986 introduction to Of Woman Born, “oppression can warp, undermine, turn us into haters of ourselves.” But women are not responsible for poor medical care, nor are women responsible for natural (and unpreventable) pregnancy complications that jeopardize their lives and the lives of their children.
The physical toll of labor or abdominal surgery coupled with the existential endeavor of becoming a mother are hard. Coping simultaneously with the stressors of a baby’s critical illness and, in some instances, our own mistreatment, is herculean. After her protagonist experiences an incidence of obstetric violence and winds up having a C-section, Taffy Brodesser-Akner asks, in Fleishman is in Trouble, “Had every birth in the world ruined every woman in the world?” Brodesser-Akner, like Miranda July, renders postpartum PTSD as a vise grip that never quite lets go of her character Rachel Fleishman’s life.
I commend Miranda July for offering this story arc, for illuminating this common maternal experience. But I found myself wanting to scream through the pages to this narrator, wanting to tell her, for much of the book, not to diminish the essential act of saving our children.
I wanted to say to this narrator what I say to my patients’ parents, what I said to myself, what I write to the millions of women who feel siloed despite their commonalities, when their babies are born sick. We fought for this. We fought for the resources and knowledge to invest in our children’s future so that they would not be discarded, would not die. The natural arc of human survival is a bell curve. Only because of the medical advancements we’ve made for babies has it become a straight, sloped line.
Neonatal intensive care is a gift we cannot overlook.
We are living at a time when our federal government denies our fundamental right to control our bodies. Consequently, it is increasingly dangerous to deliver a child. To protect ourselves, and to protect our children, who are dying more often as infants precisely because we lack bodily autonomy, we must talk about the experience of birthing sick babies and watching their resilient bodies respond to life-sustaining care. We must speak about it, scream about it. And we must write about it, lest we lose our children’s lives, too.
