Universal congenital cytomegalovirus (cCMV) screening faces a fragmented state-by-state landscape in 2025 following the disbandment of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), which previously reviewed data and recommended conditions for the federal Recommended Uniform Screening Panel (RUSP), according to Dr. Megan Pesch. Without federal action, states must pursue screening individually, leaving only Minnesota and Connecticut with active cCMV screening programs.
The Regulatory Hurdle of Federal Screening Recommendations
Adding cCMV to the federal RUSP has become difficult following organizational changes at the federal level, according to Pesch. The now-disbanded ACHDNC played a critical role in reviewing scientific data on screening protocols and treatment to recommend conditions for nationwide newborn panels. When screening is established at the federal level, states avoid the burden of implementing programs individually fifty times, Pesch noted. Only Connecticut and Minnesota currently screen for cCMV.
Did you know? Congenital CMV is the most common viral cause of birth defects in the United States, yet roughly 90% of the population has never heard of it, according to advocate Ann Nyberg.
Grassroots Advocacy and the Connecticut Screening Law
In Connecticut, a 2016 law mandates automatic CMV screening for newborns who fail their routine hearing tests. Ann Nyberg, a 69-year-old journalist from Madison, Connecticut, pushed for expanded statewide universal screening after her granddaughter, Bevin, was born deaf and diagnosed with cCMV. Nyberg testified before the state House and worked alongside audiologists and affected families to pass the universal screening mandate, which took effect in July 2025. According to Nyberg, the statewide screening panel has detected 70 babies with cCMV in 1 year.
Bevin received an automatic screening due to the hearing test protocol and was able to start antiviral treatment that helped her vision. However, the condition still caused significant impacts. “Our Bevin, at nearly 4, does not feed herself. She does not walk yet. She does not talk. She has plaque in her brain,” Nyberg said. “We don’t know how she’s going to end up. But she’s the happiest toddler I’ve ever seen in my life.” Nyberg is currently working with her senators, Chris Murphy (D-CT) and Richard Blumenthal (D-CT), to implement a national screening program.
Transmission Risks and Prevention Awareness
Expectant parents frequently contract the virus from older children who catch it at daycare and bring it home asymptomatically, according to Pesch, who also has a daughter with cCMV. CMV spreads through saliva. Parents often contract it by kissing toddlers, finishing food from their plates, or sharing utensils, water bottles, and toothbrushes. Raising awareness allows pregnant women to alter these daily habits to protect themselves, much like avoiding sushi or soft cheeses during pregnancy. Longo, whose son was diagnosed with mild right-sided hemiplegic cerebral palsy from cCMV, noted that greater awareness gives mothers an opportunity to try prevention. “Had there been a conversation, would we have tested for it during pregnancy?” Longo said. “I don’t know. But we would have probably pushed to test immediately after he was born.”
Frequently Asked Questions
What is congenital CMV?
Congenital cytomegalovirus (cCMV) is a viral infection passed from mother to child during pregnancy, which can cause hearing loss, vision impairment, and developmental delays.
How does CMV spread within families?
The virus spreads through saliva. Pregnant women often contract it from young children in daycare through shared utensils, cups, toothbrushes, or by kissing.
Which states screen newborns for cCMV?
Only Connecticut and Minnesota screen for cCMV.
What treatments are available for cCMV?
Antiviral medications can be administered to infants diagnosed with cCMV to help mitigate certain symptoms, such as vision issues, though hearing loss and developmental delays may persist.
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