Congenital Cytomegalovirus (cCMV) – Advocacy Statement

Approved at the 2024 Business Meeting

Congenital cytomegalovirus (cCMV) is a common condition affecting an estimated one in 200 babies born in the United States. CMV is a very common virus. When healthy adults are infected, usually symptoms are mild flu-like symptoms. However, if a woman is primarily infected while pregnant, there is a risk of transmitting this to the fetus. cCMV is more common than all other conditions tested for in the Wisconsin newborn screening panel. While most babies born with cCMV have no symptoms, cCMV can lead to a wide variety of disabling neurologic conditions including cerebral palsy, seizures, failure to thrive, vision loss, and hearing loss. The hearing loss may be present at birth, delayed, or progressive. Early detection of cCMV can lead to improved outcomes. Specifically, as it relates to hearing, identifying children with congenital hearing loss caused by cCMV may lead to improved hearing outcomes, earlier interventions for hearing rehabilitation and other early childhood developmental interventions, improved multi-disciplinary care, and better recommendations for long-term monitoring. Having a diagnosis of cCMV as a cause of the hearing loss also prevents patients from needing unnecessary expensive and intrusive testing for other possible causes of congenital hearing loss. There are several cCMV tests available using blood, urine, or saliva. Regardless of type of test, testing for cCMV must be done within 21 days of life to reliably conclude that the infant was infected in utero rather than after birth.

There are a variety of screening and education protocols used throughout the US. Minnesota was the first to implement universal newborn screening in 2022. A similar bill was recently passed in Connecticut, and at least five more states have introduced universal newborn screening bills. Several other states, including nearby Illinois and Iowa, have elected for a more targeted approach for testing only those infants who fail newborn hearing screening – by mandating either cCMV testing or education with option for cCMV testing. Targeted screening may miss infants who do not yet have hearing loss. Currently, Wisconsin does not have a law regarding screening, testing, or education for cCMV. In accordance with our national medical specialty organization, the American Academy of Otolaryngology-Head and Neck Surgery, it is the position of the Wisconsin Society of Otolaryngology that Wisconsin should mandate universal newborn cCMV screening to best accomplish the ideal goals of early detection and early treatment of infants with cCMV related hearing loss. 

References:

Universal newborn congenital cytomegalovirus (cCMV) screening. American Academy of Otolaryngology—Head and Neck Surgery, and Foundation Position Statement. February 19, 2024

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