by Miriam Bernard
Welcome to a collaboration with the NODCC and its key researchers from around the globe, in which we introduce our community members to the specific research of friends of the NODCC. This month we are excited to highlight the work and passion of Dr. Lauren D. Haisley, Pediatric Neuropsychologist/Assistant Professor of Pediatrics at the University of Minnesota and Medical Director of the Masonic Institute for the Developing Brain (MIDB) Clinic. Dr. Haisley is making remarkable strides in understanding early development in children with disorders of the corpus callosum. Based in Minneapolis, Dr. Haisley balances her time between clinical work and research at the Masonic Institute for the Developing Brain, where she also serves as Medical Director of the clinic.
Dr. Haisley’s path to work with DCCs began with graduate training at the University of Connecticut and has since grown into a career dedicated to supporting children and families through both direct care and scientific research.
Dr. Haisley’s largest project is the Infant Development Study (with Lynn Paul PhD and Jed Elison PhD), a collaborative project that enrolls families as early as pregnancy or infancy when a diagnosis of agenesis of the corpus callosum is suspected/diagnosed. Children are followed closely from birth through the preschool years, with the goal of understanding developmental milestones, early challenges, and strengths. This study is active and ongoing, and Dr. Haisley invites any interested and eligible families to participate. More information on joining is available HERE.
The particular area of expertise Dr. Haisley centers on is the birth-to-three years period, a critical window for growth and learning. “I really want to give clinicians and parents clear, accurate information about what to expect in those early years,” she explains. Early findings show that many children meet typical developmental milestones, but research also shows that about a quarter of participants show evidence of delays and thus her group recommends all children with DCCs be monitored closely by their PCPs and enroll in early intervention. Identifying these children early is crucial, since therapies such as speech and physical therapy can make a lasting difference in their lives as they grow.
Another area Dr. Haisley has made a focus is the relationship between DCCs and autism spectrum disorder. She and her colleagues bring children to the University of Minnesota for evaluations around age two to better understand whether autism is more common in this population, and how best to support those children and families over time.
It’s obvious Dr. Haisley has found fulfilling work when one notices her deep appreciation for the families she works with. As we spoke with her, she frequently noted how much she has learned from parents’ lived experiences, whether through formal interviews or conversations at the NODCC conference. She notes that through this work, “Ultimately, families are empowered with the information they need and we can give information such as the right supports tailored to that individual at the right time.”
One thing many NODCC families have shared with us through the years is the uncertainty they faced at diagnosis; receiving information that ranged from overly dire predictions to vague reassurances. Dr. Haisley is determined to fill those gaps by producing research that can guide both providers and parents with evidence-based insights. “It’s such a scary place to be when you don’t know what to expect,” she says. “I want families to feel empowered and supported.”
Her published work, including a study in the Journal of Pediatrics, has already helped clarify patterns of communication, motor, and daily living skills in infants and toddlers with ACC. Those who wish to read the work in its entirety can download the piece by clicking HERE.
The future of Dr. Haisley’s research is as ambitious as it is hopeful. She states, “Part of this small grant is being able to say… can we tie the behavioral assessment piece to actual brain changes and learn more about what happens in those early years at a brain level.” With the hope of new grants in the near future, her desire is to combine behavioral assessments with advanced brain imaging, deepening our understanding of what happens in the developing brain during those first critical years. She also hopes to contribute to intervention studies – testing which types of support work best for children with ACC.
Ultimately, Dr. Haisley’s vision is clear: that every family facing a diagnosis of ACC has access to accurate information, timely interventions, and supportive systems that allow each child to thrive.
When not busy researching DCCs, Dr. Haisley embraces her home state of Minnesota’s outdoors with her husband and two-year-old son. Originally from Colorado, she loves hiking and spending time near the water; a passion her toddler enthusiastically shares. Between chasing trucks, splashing in lakes, and keeping up with family and friends across the country, she brings the same energy and curiosity to her personal life as she does to her groundbreaking research.
The NODCC is so grateful to Dr. Haisley for sharing her valuable time to tell us more about her work, and we look forward to a long and continued collaboration with her and her team.