Aimee Durrett

CAPSTONE

Capstone Project Committee: Randi Culp Stewart, M.S., CGC, Jennifer Badik, M.D., Jaime Brown, Rachel Mills, M.S., CGC

Turner syndrome (TS) is a common aneuploidy characterized by premature ovarian failure and infertility. Early knowledge of potential infertility can be distressing for individuals with TS and their parents, who are often tasked with disclosing infertility to their daughters. However, delayed disclosure can impact their daughter’s self-esteem, planning for the future, and relationships with her parents and medical providers. Lack of child-friendly resources is a major barrier to communication about infertility. Therefore, this project aimed to create a children’s book for 6-8-year-old girls with TS about infertility and family planning options, and to assess its accuracy and perceived ability to serve as a communication tool between parents and their daughters. The book, Love Makes a Family: For girls with Turner  syndrome and their parents, was created to depict how families come in all shapes and sizes but are defined by their love. Parents of girls with TS and healthcare providers who work with individuals with TS were recruited to review the initial book draft and illustration of the central character’s family. They were also asked to provide tips for parents and girls with TS to be included in the book. Four parents completed interviews and three providers responded to an anonymous survey. Themes of parental feedback included age-appropriate wording, emphasis on love, particularly when discussing adoption, and addressing the variable features of TS. Professional feedback also suggested more age-appropriate wording, recommendations for distribution of the book, and recommendations for future resources such as a pamphlet about infertility targeted to adolescent girls with TS. Parental and professional feedback informed further editing of the book, including adjustment of wording, the inclusion of an opening paragraph describing TS, and the inclusion of tips for coping and communication for parents and their daughters. Tips for parents largely focus on ways that they can support their daughter. Tips for girls focus on loving and accepting themselves. Plans for distribution include sending English and Spanish versions of the book to Turner syndrome clinics, support organizations and study participants as well as making them available digitally. This book is the first resource of its kind to engage parents and their young daughters in communication about potential infertility related to TS.

Since Graduation

Aimee is from Charlotte, NC and graduated from NCSU with a B.S. in Genetics and minor in Psychology. While at UNCG, Aimee developed a children’s book for girls with Turner syndrome focused on infertility and family planning, “Love Makes a Family: For girls with Turner syndrome and their parents.” After graduation, she married her wonderful husband Danny and moved down to Baton Rouge, LA.

They currently have two sweet guinea pigs, Moose and Pip, and two crazy pups, Hailey and Winnie, who keep them busy. In July, Aimee started her first job as a genetic counselor at Our Lady of the Lake.

She primarily sees pediatric patients, but does continue to see adult, cancer, and prenatal patients on occasion. Her interest in patient resources continues and she will be helping to lead a workshop on needs assessments at the upcoming 2020 NSGC Annual Education Conference.