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Post-Operative Complications Following Feminizing Genitoplasty in Moderate to Severe Genital Atypia: Results from a Multicenter, Observational Prospective Cohort
Avi Baskin, MD1, Amy B. Wisniewski, PhD2, Christopher E. Aston, PhD2, Megan Perez, MS, MBA3, Larry L. Mullins, PhD2, Alli Mullins, BA3, Paul Austin, MD4, Yee-Ming Chan, MD5, David A. Diamond, MD5, Amy Tishelman, PhD5, Earl Y. Cheng, MD6, Theresa Meyer, MS, RN, CPN6, Elizabeth Yerkes, MD6, Saul Greenfield, MD7, Sabrina Meyer, CPNP, RN7, Allyson Fried, MS, PNP7, Thomas Kolon, MD8, Blake Palmer, MD9, Kristy J. Scott Reyes, MS9, Cortney Wolfe-Christensen, PhD9, Yegappan Lakshmanan, MD10, Natalie Nokoff, MD11, Alethea Paradis, MTS12, Dix Poppas, MD13, Laurence Baskin, MD1.
1University of California, San Francisco, San Francisco, CA, USA, 2University of Oklahoma Health Sciences Center, Oklahoma City, OK, USA, 3Oklahoma State University, Stillwater, OK, USA, 4Texas Children's Hospital and Baylor College of Medicine, Houston, TX, USA, 5Boston Children's Hospital, Boston, MA, USA, 6Lurie Children's Hospital of Chicago, Chicago, IL, USA, 7John R. Oishei Children's Hospital, Buffalo, NY, USA, 8Children's Hospital of Philadelphia, Philadelphia, PA, USA, 9Cook Children's Medical Center, Fort Worth, TX, USA, 10Children's Hospital of Michigan, Detroit, MI, USA, 11Children's Hospital Colorado, Aurora, CO, USA, 12St. Louis Children's Hospital, San Francisco, MO, USA, 13New York Presbyterian Hospital/Weill Cornell Medicine, New York, NY, USA.

Background: Disorders/differences of sex development (DSD) are congenital conditions in which there is atypical chromosomal, gonadal and/or phenotypic sex of an individual. While there remains controversy around the traditionally binary concept of sex, most patients with DSD are reared either male or female depending on their genetic sex, genital phenotype, gonadal sex and status of their internal genital tract. Many patients receive surgical treatment; however, the scarcity of surgical outcomes data limits the ability to make informed recommendations for families regarding shared surgical decision-making. The aim of this study is to describe 6-month post-operative complications of young patients undergoing feminizing genitoplasty for DSD.
Methods: This NIH-sponsored study is an ongoing, observational, multicenter cohort assessing medical, surgical and psychological outcomes in children and families affected by atypical genitalia due to DSD. Participants were prospectively enrolled from 12 children's hospitals across the United States that specialize in DSD care. Eligible patients had moderate to severe genital atypia, were ≤2 years of age at entry, and had no prior genitoplasty. This report focuses on patients reared female. Variables collected include karyotype, DSD etiology, family history, type of surgery and post-operative complications 6 months following genitoplasty.
Results: Of the 92 patients in the cohort, 57 (62%) were reared female. The majority of these patients had 46,XX DSD (n=53) while 2 had 46,XY DSD and 2 had sex chromosome abnormalities. Fifty-two (91%) patients had surgery, all of whom underwent vaginoplasty, 38 (73%) clitoroplasty, 29 (56%) partial urogenital mobilization and 16 (30%) complete urogenital sinus mobilization. Of the 52 patients who had surgery, 43 patients had follow-up through 6 months post-surgery. Twenty two percent of patients (9/43) experienced post-surgical complications. Six (14%) experienced Clavien-Dindo III complications. Four had vaginal stenosis, one had a urethral vaginal fistula and one had skin flap dehiscence. The remaining three complications (skin separation/mucosal tags) were managed without surgery. Of note, of the 5 patients who did not undergo surgery, none reported having UTIs within 6-month follow-up from study compared to 2 patient in the surgery group (4%) (p=0.59).
Conclusion: Of patients who underwent feminizing genitoplasty, 22% experienced complications in the first 6 months. The most common complication was vaginal stenosis (4 patients). Six (14%) had complications significant enough that further reconstructive surgery is likely. Information on post-operative complications is needed to counsel families prior to making decisions about feminizing genitoplasty for young children with DSD reared female.


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