"You can only give warmth to your baby when it's too late": Parental bonding with their extremely preterm and dying child

"You can only give warmth to your baby when it's too late": Parental bonding with their extremely preterm and dying child

Abraham A; Hendriks M J

Swiss Medical Weekly

2017

infant; death; semi structured interview; delivery room; caregiver; university hospital; neonatal intensive care unit; prematurity; conference abstract; human; child; controlled study; uncertainty; biological product; heat; parenthood

Introduction: Various factors hamper the bonding process between parents and their extremely premature baby. Parental bonding is especially difficult and complicated when babies do not survive and die either in the delivery room or in the neonatal intensive care unit (NICU). This process is strongly compressed and complicated by several factors addressed in this study. Method(s): In order to explore how parents experience the dying process of their extremely premature babies, we conducted 13 qualitative semi-structured interviews with 20 parents. We recruited parents of extremely premature infants who were born alive and died in the delivery room or in the NICU at the University Hospital Zurich in the years 2013-2015. Result(s): Our study on end-of-life decisions in extremely preterm babies shows that parents of this group experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the intensive care unit (NICU), the physical distance to the child, medical uncertainties, and upcoming decisions. Even though they are considered to be parents (assigned parenthood), the child's frail condition prevents them acting as primary caregivers. Instead, they depend on professional instructions for access and care. Embodied parenthood can be experienced only at the end-of-life, i.e., during the dying trajectory and after the child's death. Conclusion(s): Our study illustrates that parents of extremely preterm babies suffered from unpreparedness of becoming parents: They were considered parents (assigned parenthood) with the birth of their baby, but to actually feel like parents they needed to go through a process of biological and psychosocial bonding. This process of embodiment between child and parents through holding, touching, smelling, caring, and protecting could barely happen before dying because of the child's frail condition, which necessitated physical distance to enhance the chances of potential survival (distant parenthood). Thus, caring for their dying and deceased child enabled parents to become parents in an embodied sense.

June 2019 List