Hi! I’m Ellie Pryor, married to my husband, Adam, for 13 years, and together we have two children, Elsie (9) and Anderson (7). CMV became personal for our family when our second born was diagnosed with congenital cytomegalovirus at four days old. The days leading up to that diagnosis were incredibly difficult, and honestly, those four days felt very long. Our 12-day NICU stay felt like an eternity in a lot of ways because of everything we were experiencing and trying to process at the time.
Looking back, my prenatal experience with CMV almost felt like just a small blip in the journey. At my 20-week ultrasound, they noticed an echogenic bowel, which led us to seeing a high-risk doctor in Oklahoma City for additional scans and testing. The doctor explained that often an echogenic bowel means absolutely nothing, but it can also be associated with conditions like Down syndrome, cystic fibrosis, other syndromes, and viral infections, including cytomegalovirus.
We decided to move forward with all of the screenings. Prior to that, I hadn’t really felt the need to do extensive prenatal testing, but once more serious realities became part of the conversation, it felt important to look into everything. Oddly enough, the TORCH panel, including CMV testing, came back negative. Looking back now, doctors tend to conclude that the results were very likely false negatives.
What’s important to note is that seven years ago there were limited prenatal treatment options for congenital CMV. However, just seven years later, medicine has evolved, and today mothers can receive antivirals during pregnancy — the same medication my son later received after birth — to improve outcomes and, in some cases, even prevent transmission from mother to baby.
As a mother, one of the hardest reflections is realizing your baby was struggling inside of you during the time they’re supposed to be safest. That’s a hard thing to truly comprehend. And that is why all of this matters so much. We want to give babies the very best chance possible from the very beginning through every stage of their lives. We want to prevent as much struggle as we can for both babies and families and help create better futures.
From the beginning, we chose to pursue every early intervention available to us because we knew the developmental risks associated with congenital CMV. If there was an option that could support him, we took advantage of it. Today, he continues with occupational therapy and speech therapy and is doing so incredibly well.
One of the biggest things I want people to understand is how important access is — access to education, screening, resources, support, and intervention. For our family, many of those supports were two and a half hours away, meaning every appointment often became a five-hour round trip. We were fortunate to be able to make those trips, but not every family can.
Where you live should not determine whether your child gets the support they need for the best possible outcome.
Supporting babies in utero and immediately after birth reaches far beyond infancy and one single family. It impacts development, education, school systems, families, and entire communities. The earlier we can provide support and intervention, the more opportunities we give these children to thrive.
That’s why CMV awareness, education, and access to care matter so deeply.