“It was all taken away”: Lactation, embodiment, and resistance among mothers caring for their very-low-birth-weight infants in the neonatal intensive care unit

Abstract

The prevalence of infants born before 37 weeks of gestation continues to rise in the United States. Advances in neonatology have led to improved survival rates among preterm infants, including those born at a very-low-birth-weight (VLBW). Exclusive human milk feeding is a therapeutic intervention for VLBW preterm infants, and mothers are encouraged to provide their own milk. Yet, it is well-established that mothers and infants may face extraordinarily complicated lactation and infant feeding challenges in NICU settings, many of which emanate from birth trauma. The purpose of this study is to gain a deeper understanding of the ways in which the hyper-medicalized management of preterm birth and infant feeding in NICU environments affect mothers' postpartum health and well-being. Seventeen mothers of VLBW preterm infants were interviewed August 2016–June 2017 within three years of their infant's NICU discharge about their feeding decisions and experiences. Narrative analysis yielded five themes: (1) the physical and emotional trauma of giving birth prematurely impacted mothers' lactation experiences; (2) separation from their infants intensified mothers' suffering and disrupted lactation; (3) mothers experienced being marginalized in their infant's NICU care; (4) mothers practiced embodied forms of resistance to cope with both trauma and marginalization; and (5) skilled support was central to mothers' positive lactation experiences in the NICU. We draw upon feminist theory in the anthropology of reproduction to examine the fundamental hierarchies of power in U.S. neonatal critical care systems that fracture mothers' interembodied relationships to their newborns, exacerbate lactation failure, and engender traumatic postpartum neglect. Moreover, we theorize mothers' expressions of suffering in the context of preterm birth and lactation insufficiency as idioms of distress engendered by the violence of neglectful care. Narrative inquiry is instrumental to designing structural transformations in the systems of care available to mothers of preterm infants who are admitted to a NICU.