Community Alliance Chair Spotlight: Shelly Zappas, California

Community Alliance Chair Spotlight: Shelly Zappas, California

Author: Shelly Zappas, NP

My name is Shelly Zappas, and I am a nurse practitioner, educator, researcher, and advocate. Most importantly, I am the mother of an incredible daughter whose life has been profoundly shaped by congenital cytomegalovirus (cCMV).

As a healthcare provider, I had heard of cCMV but did not connect it to my daughter’s symptoms at first. Margot was born with intrauterine growth restriction and small for gestational age. Although she passed her newborn hearing screen, I repeatedly brought her in with concerns. It wasn’t until Margot was diagnosed deaf in both ears at 2 years of age that I pushed for further cCMV testing.

Margot was diagnosed with cCMV, hearing loss, and other sequelae related to the infection. Margot is also funny, bright, social, joyful, creative, and endlessly loving. She has taught our family more about strength, patience, disability, communication, and advocacy than we could have ever imagined.  But our journey was also filled with uncertainty and barriers, many of which should never exist for families.

Even with access to healthcare and my nursing background, navigating the system was overwhelming. Finding providers who understood cCMV was difficult. We met clinicians who minimized concerns, lacked familiarity with cCMV recommendations, and had little experience supporting families like ours. One thing I often think about is what happens to families who speak languages other than English, lack transportation, are uninsured, or live hours from specialists. As I became more involved with the National CMV Foundation, I began to learn just how inconsistent CMV education and screening policies are across the United States. Some states have made tremendous progress in implementing hearing-targeted CMV screening laws, provider education initiatives, and public awareness campaigns. Other states still have virtually no infrastructure for congenital CMV awareness or follow-up care.

As a healthcare educator, I teach future nurse practitioners about cCMV, disability, developmental differences, hearing loss, and family-centered care. As a researcher, I focus on disability, health disparities, communication access, and public health systems. As a parent advocate and state chapter representative, I work to push for stronger education, screening, and equitable access to care.

One of the biggest lessons I have learned is that families should not have to become experts overnight to secure services for their children. Yet many parents are forced into that role because systems are fragmented and inconsistent. A truly equitable CMV system would include universal education during pregnancy, standardized newborn screening or hearing-targeted CMV testing nationwide, coordinated follow-up systems, accessible developmental services, and provider education across disciplines. Pediatricians, OB/Gyns, audiologists, early intervention providers, and public health agencies all play critical roles. CMV cannot remain siloed within one specialty.

I want to emphasize that disability inclusion must remain central to these conversations. Children with cCMV are not tragedies. They are whole people with strengths, personalities, relationships, and futures. Our daughter’s life is filled with joy, humor, resilience, and accomplishment. Advocacy is not about “fixing” children; it is about ensuring they have access, support, communication, healthcare, and opportunity.