Professional & Parent Note

Dr. Stephanie Meredith is the Director of the Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute (HDI) and the mother of a young man with Down Syndrome. Her identity as a parent gave her particular access and understanding of the family experience after learning about a diagnosis. Dr. Nicholas Wright is a multiracial man who serves as Director of DEI at HDI and has a traumatic brain injury.

“We were both worried about leading this work because we both have ways in which we’re similar and different from Black and Hispanic mothers of children with Down syndrome. We were so grateful that as we started the conversations with the 20 parents who participated in this project, they were generous in sharing their thoughts and insights about what types of research were important to them and how to improve the systems. In fact, when we asked the first question about their research priorities, they were so eager to talk about their thoughts on the diagnosis experience that we had to repeat the question to gather all their important insights.”

“At the risk of being vulnerable and emotional, their willingness to share felt sacred, and they correspondingly expressed that they appreciated the opportunity to offer those insights. We were also grateful to our health equity and medical professional teams for sharing their unique insights and for being wonderful professionals who are committed to helping families.”