Grant: Catalyst Grant: Ethics

Some babies' births are complicated by prematurity or other medical problems prompting admission to a newborn intensive care unit. A number of these children are born with congenital anomalies. Certain anomalies may be identified during pregnancy, and others are not recognized until after birth. While anomalies may not outwardly appear visible, some occur along with striking changes in the physical appearance of a child. To parents, this appearance may be unexpected and distressing. Parents may experience a divisive bodily encounter with a child who appears so "other" than them, different from their body, yet also so clearly from them, a child of their body. Limited research has addressed this ethical experience from the perspective of the parent in spite of the fact that this relational encounter may shape subsequent parent-child interactions and moral decision-making. The aim of the proposed study is to develop a rich understanding of the parental experience of the birth of a child with a visible congenital anomaly who requires hospital care in a newborn intensive care unit. This study will use a qualitative methodology to empirically explore a variety of such parental experiences. The final research texts and knowledge translation media, which present the study findings, will facilitate knowledge translation by developing understandings in lay and professional readers. As such, this study will effect the healthcare provider to become more understanding of the experiences of parents who are faced with the birth of a child with a visible congenital anomaly. Ultimately, this knowledge is fundamental to the reflective ethical practice of the various health discipline practitioners responsible for the infant patient and family.