Parental Emotional Experience and Support Needs Following Diagnosis of Sexual Differentiation Disorder in Newborns

Abstract

INTRODUCTION: Disorders of sex development (DSDs) in newborns represent a challenging diagnosis for parents, often resulting in intense emotional distress, particularly in neonatal intensive care units (NICUs) where mortality risk is high. In Morocco, NICUs frequently manage such cases, yet data on parental experiences and support needs following DSD diagnosis remain limited. Previous studies on parental responses to congenital anomalies rarely focus specifically on DSDs in this context. This article aims to synthesize available evidence on the emotional impact and support requirements for parents of newborns diagnosed with DSDs. MATERIALS AND METHODS: This was a descriptive study based on a questionnaire developed in the neonatal resuscitation unit, administered to parents of 18 newborns presenting with a sexual differentiation disorder. Responses were analyzed descriptively and qualitatively. RESULTS: Among the 18 parents included, 15 (83.3%) reported intense anxiety associated with decision-making stress. Difficulties in understanding medical information and emotional blockade were reported by 12 parents (66.7%). Fear regarding the child's health and future was reported by all parents (100%). Feelings of guilt and self-blame were reported by 5 parents (27.8%), attributed to genetic factors, medication exposure, or perceived moral fault. Rapid sex assignment was requested by 16 parents (88.9%), while denial was observed in 1 parent (5.6%). Psychological distress was more pronounced in parents whose infants required neonatal intensive care, particularly in the three cases that resulted in infant death. CONCLUSION: This synthesis highlights significant parental emotional vulnerability following the diagnosis of sex development disorders in newborns, further intensified by medical severity and the intensity of neonatal care. Health authorities, hospitals, multidisciplinary teams, and researchers should prioritize early empathetic interventions and tailored communication strategies to alleviate psychological distress and improve family outcomes in high-burden settings such as NICUs.