Universal Congenital Cytomegalovirus Newborn Screening

Pathway Background and Objectives

Congenital CMV (cCMV) occurs in 0.4-2% of live births and is the leading cause of congenital infections worldwide.1,2 Connecticut is estimated to diagnosis up to 175 cases per year within our state if all infants are screened at birth. cCMV is the leading cause of non-genetic sensorineural hearing loss (SNHL), causing 20% of all hearing loss present at birth and increasing to 25% by age 4 years. 2,3 Early detection of cCMV infection and treatment with oral valganciclovir in those who are moderate to severely symptomatic can reduce the risk of development or progression of sensorineural hearing loss and improves developmental outcomes.4,5 Recently, there is a new recommendation from the AAP for treatment of clinically inapparent infants with only hearing loss to improve hearing outcomes.6 In 2016, Connecticut implemented House Bill 5525, An Act Concerning Cytomegalovirus that mandated targeted cCMV screening for all infants who did not pass their newborn hearing screen. Because not all infants are symptomatic at birth (10%) but can go on to develop hearing loss, targeted screening will not detect all infants who are congenitally infected. For example, Fowler et al reported that 43% of infants who developed postnatal hearing loss went unidentified in their 2007-2012 multicenter study3 As of July 1, 2025 our state is now conducting universal cCMV screening on all infants through our state newborn screening program. This is a shift in how our state tests for cCMV, which may create confusion and questions. A pathway is needed to help standardize guidelines in the follow up of testing results and next steps. The specific objectives of this clinical pathway are to:

•    Create an easily assessable standardized protocol that aligns with current expert guidance on the testing and work up for cCMV in newborns

•    Collaborate with the Connecticut Newborn Screening Program to ensure all infants are appropriately screened for cCMV and receive standard-of-care follow up 
 

Algorithm  Educational Module

•    Under development

•    Debbie Ellis, MSN, RN, Connecticut Newborn Screening Network
•    Ashley Howard, DO, Pediatric Infectious Diseases 

The clinical pathways in the above links have been developed specifically for use at Connecticut Children’s and are made available publicly for informational and/or educational purposes only. The clinical pathways are not intended to be, nor are they, a substitute for individualized professional medical judgment, advice, diagnosis, or treatment. Although Connecticut Children’s makes all efforts to ensure the accuracy of the posted content, Connecticut Children’s makes no warranty of any kind as to the accuracy or completeness of the information or its fitness for use at any particular facility or in any individual case.