Becoming a Parent After a Prenatal Diagnosis: A Model of Preparing Heart and Mind Within the Caregiving System

In the United States, 3% of infants are born with major congenital anomalies. This percentage increases to nearly 10% when assisted reproductive technologies are used to achieve pregnancy. A major congenital anomaly is defined as any abnormality of genetic or partly genetic origin affecting body structure and function that requires treatment. The risk for sub-optimal physical and psychological infant health, the increasing trend in prenatal diagnoses and the challenges involved in parenting these medically complex infants underscores the pressing need to learn about the process of becoming a parent following prenatal diagnosis. The purpose of this study was to contribute to the understanding of how parenting develops in this new technologically complex context of pregnancy. Grounded dimensional analysis guided this study. Data collection involved interviews conducted once with each family during the third trimester of pregnancy. As the study progressed, interviews evolved from unstructured to semi-structured. Demographic and health information was collected to describe the sample. Analysis included open, axial, and selective coding, comparative analysis, memo writing, matrix construction, theoretical sampling, and member checking.;The sample included 25 families comprised of 37 expectant parents of 26 fetuses diagnosed with at least one anomaly. The sample also included 14 families comprised of 21 expectant parents of 14 healthy fetuses for comparitive purposes.;Findings yielded a conceptual model with a core process of preparing heart and mind to become a parent to a medically complex infant. Following a prenatal diagnosis, expectant parents' perceptions of fetal/expected child health, experiences of previous loss, and interactions within different social environments led to variation in how these expectant parents engaged in the process of preparing heart and mind. This variation was marked by turning points associated with the relational trajectories of claiming the child as one's own, delaying the connection to the fetus, or doing the routine pregnancy. The strategies utilized by expectant parents and consequences of these strategies were comprised within the trajectories. These findings suggest modifiable factors to support expectant parents in reaching their desired outcomes. Considering threats to family health, the conceptual model is valuable for future development of parent-centered assessments and interventions.