Support Information for Parents: Thinking About Your Child's Sex Development

Abstract

We have created an information resource guide for parents and family members of young children who have a difference (or disorder) of sex development (DSD). This guide provides basic information about conditions that affect how a baby’s body looks or works and continues with more specifics about the condition and its management. Some specific topics include how parents can share information with other people (including family, friends, and their child as he or she grows up) and whether parents and the medical team may consider further testing (including genetic tests). Depending on a child’s specific DSD condition and the healthcare team who takes care of the child, parents can be asked to help make treatment decisions. When that happens, we want parents to know they are not alone. The child’s medical team is there to help, and this guide is here to help by providing parents information and helping parents carefully think through different options. There are different sets of questions throughout this guide to help parents work with the healthcare team to made decisions based on the best available evidence balanced with family values.