Audiologist, Seattle Children’s Hospital
Founder, Washington CMV Project
Emily Gallagher, MD, MPH
Associate Professor | Craniofacial Center
Department of Pediatrics, Seattle Children’s Hospital
Advisory Board Member, WA state EHDI program (Early Hearing Detection and Intervention)
Congenital cytomegalovirus (cCMV) is a potentially devastating viral infection with a high incidence and low awareness. It is the most frequent cause of congenital infection in the world with an incidence of 1 in 200 1. This is a higher incidence than any of the other 35 disorders on the Recommended Universal Screening Panel or on the Washington State Newborn Screening Panel. Approximately 40-50% of the population is exposed to this virus before adulthood2. Since symptoms can be mild, individuals may unknowingly be infected and shed the virus.
Infants born with cCMV may present with such symptoms as thrombocytopenia, petechiae, hepatosplenomegaly, intrauterine growth restriction, microcephaly, ventriculomegaly, intracerebral calcifications, cortical or cerebellar malformations, chorioretinitis, or sensorineural hearing loss3. These symptoms range from relatively mild to severe and life-threatening. Only 10-25% of children are symptomatic at birth. Initial asymptomatic presentation does not negate future negative impact from the congenital infection. Among children with cCMV, 10-15%will develop sensorineural hearing loss4. It is the leading cause of non-genetic hearing loss in children. cCMV-related hearing loss has a varied presentation (progressive, fluctuating, stable, and with varying degrees of severity) making diagnosis and treatment difficult if not identified and closely monitored. Early detection and intervention of hearing loss can positively impact a child’s development.
Although this virus is widespread and has serious impacts on children, the lack of awareness about cCMV increases the number of exposed infants. In 2016, a study showed that 91% of women of childbearing age were unaware of CMV and its impact on their unborn child5. Simple prevention strategies include frequent hand washing and avoiding kisses on the mouth or sharing utensils with children.
Symptomatic infants should receive a screen for possible cCMV infection. Asymptomatic presentation does not typically trigger screening unless there is concern for a mother’s exposure while pregnant. However, the asymptomatic infants need attention of medical providers to ensure cCMV infection is not missed. Currently, 6 states have mandated newborn screening of cCMV. Washington is not one of them, but some hospitals are piloting newborn cCMV screening. Typically, screening is targeted to infants who do not pass their newborn hearing screening. To distinguish between a congenital or acquired infection, testing must be completed within the first 21 days of life. Treatment and monitoring should begin immediately when cCMV is confirmed, including anti-viral medications and regular hearing evaluations, with hearing amplification when needed.
The Washington CMV Project was founded in early 2020 to help promote CMV education and advocacy in Washington State. The goal is to revise the Washington State Administrative Code to include cCMV in the newborn screening panel. While a universal screen would reach the most infants, a targeted approach has been shown to be cost effective and impactful in other states. In August, the Washington CMV Project requested the State Board of Health convene a Technical Advisory Committee to review the viability of including cCMV in the newborn screening recommendations. While this decision is pending, the Washington CMV Project continues to foster education, awareness, and continues to encourage change in Washington.
- Marsico, C., & Kimberlin, D. W. (2017). Congenital Cytomegalovirus infection: advances and challenges in diagnosis, prevention and treatment. Italian journal of pediatrics, 43(1), 38. https://doi.org/10.1186/s13052-017-0358-8
- Centers for Disease Control and Prevention. 2020. About Cytomegalovirus (CMV). https://www.cdc.gov/cmv/overview.html
- Rawlinson, W. D., Boppana, S. B., Fowler, K. B., Kimberlin, D. W., Lazzarotto, T., Alain, S., … & Greenlee, J. (2017). Congenital cytomegalovirus infection in pregnancy and the neonate: consensus recommendations for prevention, diagnosis, and therapy. The Lancet Infectious Diseases, 17(6), e177-e188.
- Cannon, M. J., Griffiths, P. D., Aston, V., & Rawlinson, W. D. (2014). Universal newborn screening for congenital CMV infection: What is the evidence of potential benefit? Reviews in Medical Virology, 24(5), 291–307. https://doi.org/10.1002/rmv.1790
- Doutre, S. M. Barrett, T. S. Greenlee, J. & White, K. R. (2016). Losing Ground: Awareness of Congenital Cytomegalovirus in the United States. Journal of Early Hearing Detection and Intervention, 1(2), 39-48. DOI: 10.15142/T32G62