Voices of Parents of Children with Major Congenital Anomalies: Themes from Initial Diagnosis, NICU Hospitalization, and Discharge Home

Abstract

Objective: To describe the parent experience of having an infant with a congenital anomaly from prenatal diagnosis. NICU, and post-NICU care Study design: Qualitative study Results: We interviewed 18 parents (13 mothers, 5 fathers) whose children were in our NICU to explore challenges in care and identify strategies to improve care. During the prenatal period, key challenges were inadequate initial support, having to decide about medical procedures, impact on mental health, and loss of a “normal” baby. In the NICU, challenges were lack of interdisciplinary communication, isolation, and knowing how to parent. After discharge home, challenges were hypervigilance, burden of caregiving, adjusting to life at home, and financial impact. Conclusion: Parents of infants with anomalies experience significant stress and isolation after initial diagnosis and NICU care. Key interventions helpful to families were empathetic and consistent healthcare teams; consistent communication,engagement in NICU care, and ongoing support after discharge home.