Psychological Adjustment in Parents of Children Born with Atypical Genitalia 24-months After their Child Undergoes Genitoplasty

Purpose: Disorders of sexual development (DSD) are congenital conditions in which patients are born with ambiguous genitalia, discordant gonadal sex, or chromosomal atypia. Parents of patients with DSD have the decision to proceed with surgical genitoplasty as an option to align the phenotype with sex of rearing. These parents become at risk for developing psychological distress. We examined parental psychological adjustment up to 24 months after their child underwent genitoplasty. Methods: As part of a larger, multi-site study, parents of children who: 1) were born with a DSD involving ambiguous genitalia, 2) were under two years old at enrollment, and 3) had no history of previous genital surgery were recruited by the Urology Department at Cook Children's Medical Center. Questionnaires completed by the parent participants assessing levels of anxiety, depression, posttraumatic stress symptoms (PTSS), uncertainty, and decisional regret were collected longitudinally: before genitoplasty and 6, 12, and 24 months post-genitoplasty. Results: Ten parents of 5 children were included in the analyses. Results revealed that over the course of the study, parents showed significant improvements in levels of PTSS, anxiety, and uncertainty. Although symptoms improved, mothers continued reporting higher levels of anxious and depressive symptoms than fathers, while fathers reported higher levels of lack of clarity about the child's diagnosis and decisional regret. Conclusions: Twenty-four months after the child's genitoplasty, parents reported coping better overall. However, patterns of adjustment differed between parents, suggesting that mothers and fathers may require unique interventions to help cope with their child's diagnosis.