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Parents urge universal newborn screening and prenatal education for congenital CMV after delayed diagnoses

July 14, 2025 | 2025 Legislature MA, Massachusetts


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Parents urge universal newborn screening and prenatal education for congenital CMV after delayed diagnoses
Parents and clinicians urged the Joint Committee on Public Health to require prenatal education about congenital cytomegalovirus (cCMV) and universal newborn screening, saying early detection can allow medical treatment and early interventions that improve language and developmental outcomes. "When Ryan was born, no one mentioned CMV — not during pregnancy, not after delivery, not once across three children," said Danielle LaVaughn, whose son Ryan was born with cCMV and is profoundly deaf. She said the result sat in his chart and the critical 21‑day antiviral window was missed.The LaVaughns and other families described similar stories: a positive newborn swab went unreported or testing was not done because the infant passed the newborn hearing screen. Keith LaVaughn told the committee universal testing could have afforded his family choices: "Early detection within those first critical 21 days does not just identify a potential health risk. It buys families invaluable time."Clinicians and public‑health advocates also recommended mandatory prenatal information for expectant parents about simple infection‑reduction steps such as hand hygiene and avoiding sharing utensils with young children. Rebecca Sandoz, a medical‑student researcher, told the committee surveys and pilot studies show pregnant people want this information and providers often feel underprepared to discuss cCMV. Pediatric audiologists and neonatal specialists pointed to evidence that up to 15 percent of asymptomatic infants with cCMV develop later hearing loss and that states with universal screening identify infants earlier and connect them to early intervention.The bills under review included Senate Bill 1573 and House Bill 4718 (congenital CMV screening and education). Testimony asked the committee to report the measures favorably so prenatal education and a newborn swab policy could be implemented statewide.

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