Background: CMV is the most common congenital infection worldwide, affecting 0.2–6% of live births and causing significant morbidity and mortality. Although most infections are asymptomatic, severe cases can lead to fetal demise. Objective: To quantify and characterize confirmed CMV infection among fetal demises in a large pediatric hospital in the US from 2013 to 2024. Methods: A retrospective electronic health record (EHR) review of pregnancies with CMV testing, delivery summaries, and confirmed fetal CMV infection via tissue or autopsy linkage. Results: During the review period, 61,973 pregnancies were recorded, with 1173 resulting in fetal demise. Among 1670 pregnancies tested for CMV, 859 had positive testing (e.g., CMV IgG, CMV IgM, CMV DNA), including 96 demises, 94 (11%) of which we had complete delivery records. Four (4%) of these fetal demises were directly attributable to CMV based on positive CMV testing from amniocentesis, fetal tissue, or placenta. Most demises occurred in the second or third trimester (mean gestational age 28.4 ± 6.6 weeks), while the four CMV-attributable cases averaged 23.7 ± 3.7 weeks. Among 93 fetal demise pregnancies in which maternal CMV IgM testing was performed, 9 (9.7%) had a positive CMV IgM result. All confirmed CMV-attributable fetal demises occurred among these CMV IgM-positive pregnancies. Conclusion: These findings underscore CMV’s role in perinatal mortality and highlight the need for improved screening and prevention strategies.
Objective: The objective of this study was to assess the economic family spillover effects of childhood congenital cytomegalovirus (cCMV) in the US. Methods: This cross-sectional, Web-based study collected economic and health-state utility data between August 2024 and April 2025 using three surveys targeting caregivers of children with cCMV, children with cCMV, and their siblings. Results: Respondents included 227 caregivers, 211 children with cCMV, and 173 siblings. A high economic burden on families of children with cCMV was reported, including total mean annual costs (out-of-pocket medical and personal care expenses and work- or productivity-related costs) of $83,140 and lifetime out-of-pocket home adaptation/specialized schooling costs of $4713. The mean caregiver EQ-5D-5L utility score was 0.86, which is comparable to US general-population norms. Mean Health Utilities Indexes Mark 2 and 3 scores varied within the ranges of 0.38–0.83 and 0.03–0.73, respectively, among children with cCMV. Adult siblings reported a mean EQ-5D-5L utility of 0.90. Siblings aged 4–7 and 8–17 years reported mean EQ-5D-Y-3L utilities of 0.90 and 0.92, respectively. Conclusions: This is the first study to report the family spillover effects of caring for children with cCMV in the US. The results confirm a considerable, multifaceted burden experienced by children with cCMV and their families, spanning health-state utility and economic strains.