An In-Utero Diagnosis Story for Longtime NODCC Community Member, Heather Richmond
Compiled by Miriam Bernard
As part of NODCC’s ongoing In Utero Diagnosis Stories series, we are honored to share the experiences of parents who have navigated the uncertainty and hope that often accompany a prenatal diagnosis. These remind families that while every journey is unique, no one has to walk alone. For Heather Richmond, that journey began more than 20 years ago, when prenatal imaging and information were far more limited than they are today.
Heather first learned that something was wrong during her pregnancy at around 20 weeks. Living in New Jersey at the time, she and her family were suddenly thrust into a world of specialists, testing, and unanswered questions. It was not until week 30, after undergoing a maternal fetal MRI in Cleveland, that Heather finally received a diagnosis for her daughter, Sabine: complete agenesis of the corpus callosum.
Although having a diagnosis brought some clarity, it also opened the door to a wave of emotions. Heather describes the experience as a constant tension between relief and uncertainty. Knowing what was happening gave her something concrete to focus on, but it also led to countless questions about what Sabine’s future might hold. Doctors could explain the diagnosis itself, but because the condition was so rare, many were unable to offer clear predictions or guidance.
Back then, families did not have the same access to resources and virtual support networks that exist today. Heather remembers feeling overwhelmed by the lack of available information and by the emotional weight of what felt like an impossible situation. Like many parents facing a prenatal diagnosis, she wrestled with self-doubt, wondering if she had somehow caused her child’s condition.
Looking back, Heather recognizes those feelings as part of the grieving process that frequently accompanies diagnoses of this nature. She shared, “It’s almost like you go through the stages of grief. I felt angry, and also guilty that somehow, I did something this child would be living with for the rest of her life. It was a big vacillation on top of pregnancy hormones.” This grieving experience is common for in-utero diagnoses, as parents navigate so many question marks. Parents often grieve not for their child, but for the expectations and assumptions they had carried into pregnancy.
What made the difference? Support. Heather credits the NODCC as one of the most important resources during those early days. At a time when answers were difficult to find, the NODCC provided reliable information grounded in research while also helping her connect with other families who understood exactly what she was experiencing.
“The NODCC was a lifesaver early on,” Heather says. Those earlier days did not involve the Zoom calls or local gatherings that today’s NODCC community thrives within, but through the our community, Heather did get connected with another mother in the Cleveland area whose child had the same diagnosis. That connection was invaluable. Simply meeting another family and seeing a child with a similar condition helped make the unknown feel a little less overwhelming. It reminded her she was not navigating this road alone.
Heather eventually became deeply involved with the NODCC, serving on the board and contributing to newsletters while Sabine was younger. She appreciated not only the scientific and educational resources we offered, but also the sense of belonging it created for families who often feel isolated in their experiences.
One of the most meaningful parts of that community came through attending NODCC conferences. Heather attended several of the early conferences and remembers how eye-opening they were. Seeing children, teens, and adults across a wide range of outcomes was initially overwhelming, but ultimately so valuable. The conferences offered something difficult to find anywhere else: perspective. Families could see firsthand that ACC and related diagnoses do not define a person’s entire life. They could meet others living with similar challenges, ask questions, share advice, and begin to imagine a future beyond the fear of diagnosis.
Today, Sabine is 20 years old and finishing her sophomore year at Colorado State University, where she studies equine sciences. Heather describes her daughter as incredibly hardworking and determined. While Sabine has faced challenges related to memory, social interactions, and certain academic subjects, she has benefited enormously from early intervention services, educational supports, therapies, and strong advocacy throughout her school years. Heather highly recommends that families in similar situations look into what similar services might be available in their local area, as they can really make a difference for a child or adolescent with challenges.
Sometimes a location’s services can be so enticing, it inspires a relocation. Ohio’s early intervention programs were one reason her family relocated to Cleveland from New Jersey shortly after Sabine’s birth, allowing them to access therapies and interventions that gave Sabine the strongest possible start. Heather was ready to do whatever it took to get Sabine the care and interventions she deserved. Now, after two decades of experience, Heather offers practical advice to parents who may be at the beginning of their own diagnosis journey. She encourages families to stay present, ask questions, and allow themselves room to process complex emotions without becoming consumed by them. “Give yourself some grace,” she advises.
Most importantly, Heather encourages families to attend conference whenever possible. For parents navigating the uncertainty of an in-utero diagnosis, there is something profoundly reassuring about being surrounded by others who truly understand. The NODCC conference is more than an educational event; it’s a place to find hope.
When not participating with the NODCC, the Richmond family enjoys traveling together, and watching movies when relaxing at home. Heather’s daughters are close and enjoy spending time together and with their mom. For families just beginning this journey, Heather’s story is a reminder that while the road may not look the way you expected, there is still so much possibility ahead. In the NODCC, there is an entire community ready to walk alongside you!