Whether or not to surgically ?correct? ambiguous genitalia in young children is an area of pediatric medicine that is highly controversial. Suboptimal outcomes such as poor cosmesis and sexual dysfunction following outdated surgical procedures have driven intense controversy in the medical community over how, or if, surgery should be used in the treatment of young children with ambiguous genitalia. To help resolve this debate, a prospective study of long-term outcomes of current surgical procedures, including complication rates associated with these procedures, is needed among individuals who receive masculinizing or feminizing surgery during early childhood. Additionally, studies of parents who decide to proceed, or not, with such surgeries for their young child are necessary to understand how these controversial decisions impact parents? reactions to their child. Finally, better understanding of cognitive, behavioral, and social development in children born with ambiguous genitalia, including identification of novel markers for predicting gender development, is needed. The overall goal of this proposal is to assess the outcomes of modern surgical techniques with a consideration of the psychological outcomes of affected children and their parents. This information is crucial for physicians to provide guidance to parents regarding the optimal approach for the management of ambiguous genitalia in young children, including the possibility that no surgery is best. The interdisciplinary group of clinicians and researchers included in the proposed studies span the fields of psychology, statistics, pediatric endocrinology, and pediatric urology. The collective experience of our group optimizes our ability to translate findings from the proposed studies to a clinical setting in a timely manner.

Public Health Relevance

The benefits and risks of modern approaches to genitoplasty in children with ambiguous genitalia due to a Disorder of Sex Development (DSD) is clearly lacking from a public health perspective. This information is necessary so that parents can provide true informed consent for their child?s medical and surgical care, as well as understand how these procedures might affect their child?s long-term adjustment. Additionally, pediatric surgeons require such information so that up-to-date standards of care can be developed for children with ambiguous genitalia. We propose to prospectively study long-term cosmetic and urinary function outcomes of children following feminizing or masculinizing surgeries as well as the psychological adjustment of their child. We will also assess parent psychological adjustment to help inform future interventions for parents who do not cope well. This project will generate important new information that can translate into improvement in surgical care and outcomes for affected children, as well as provide information necessary to recommend for, or against, genitoplasty for young children with DSD.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Research Project (R01)
Project #
Application #
Study Section
Nursing and Related Clinical Sciences Study Section (NRCS)
Program Officer
Bremer, Andrew
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Oklahoma State University Stillwater
Schools of Arts and Sciences
United States
Zip Code
Sharkey, Christina M; Bakula, Dana M; Wolfe-Christensen, Cortney et al. (2018) Parent-Rated Severity of Illness and Anxiety among Caregivers of Children Born with a Disorder of Sex Development Including Ambiguous Genitalia. Horm Res Paediatr :1-6
Bernabé, K J; Nokoff, N J; Galan, D et al. (2018) Preliminary report: Surgical outcomes following genitoplasty in children with moderate to severe genital atypia. J Pediatr Urol 14:157.e1-157.e8
Nokoff, N J; Palmer, B; Mullins, A J et al. (2017) Prospective assessment of cosmesis before and after genital surgery. J Pediatr Urol 13:28.e1-28.e6
Wolfe-Christensen, Cortney; Wisniewski, Amy B; Mullins, Alexandria J et al. (2017) Changes in levels of parental distress after their child with atypical genitalia undergoes genitoplasty. J Pediatr Urol 13:32.e1-32.e6
Wisniewski, Amy B (2017) Psychosocial implications of disorders of sex development treatment for parents. Curr Opin Urol 27:11-13
Suorsa, Kristina I; Mullins, Alexandria J; Tackett, Alayna P et al. (2015) Characterizing Early Psychosocial Functioning of Parents of Children with Moderate to Severe Genital Ambiguity due to Disorders of Sex Development. J Urol 194:1737-42
Wisniewski, Amy B; Espinoza-Varas, Blas; Aston, Christopher E et al. (2014) Otoacoustic emissions, auditory evoked potentials and self-reported gender in people affected by disorders of sex development (DSD). Horm Behav 66:467-74