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Home | Promoting Knowledge and Awareness of Congenital CMV

Promoting Knowledge and Awareness of Congenital CMV

August 13, 2018

By Mark R. Schleiss, MD, FAAP, University of Minnesota Medical School

Congenital infection with cytomegalovirus (cCMV) is common, and usually not recognized in the newborn nursery. All pediatricians are familiar with the presentation of severely affected infants – hepatosplenomegaly, petechiae, microcephaly, hearing loss – but, in fact, most infants with cCMV are either asymptomatic or minimally symptomatic. When cCMV is diagnosed and I see an affected infant in my clinical practice, virtually every family tells me that they never heard of this infection – before it happened to them!

More and more in recent years, I have wondered how it can be true that this infection – the single most common infectious diseases responsible for developmental disability, in particular hearing loss, in the United States – is so poorly known. Indeed, there is much better awareness of diagnoses associated with neonatal disabilities, such as Down syndrome, fetal alcohol syndrome, and Zika virus infection, than for cCMV. This lack of knowledge is particularly troubling in light of the fact that many cases of cCMV could be prevented by implementation of simple steps that prevent acquisition of infection during pregnancy (https://www.cdc.gov/features/prenatalinfections/index.html). Fortunately, in the past year extensive progress has been made in advancing awareness of cCMV infection.

Advocacy: Driven by the efforts of a family in St. Paul affected by cCMV, legislation to promote knowledge of the risks of CMV to women of child-bearing age has been recently been introduced in the Minnesota Legislature. This bill, which is designated as HF 2653 (also known as the “Vivian Act,” would commission the Minnesota Department of Health (MDH) to make up-to-date and evidence-based information available to health care practitioners, expectant parents and parents of infants about congenital CMV, including interventions for infants that fail their newborn hearing screens, as well as information on the transmission of CMV from mother to child, birth defects caused by CMV, preventative measures, and resources available for families of children born with CMV.

Education: The CME office at the UMN, using resources supported by the Minnesota Vikings Childrens’ Fund, recently sponsored a workshop, “CMV Biology and Infection Update”, on June 15, 2018. This workshop featured faculty at the UMN actively engaged in CMV research, and break-out workshops for parents of children affected by cCMV who discussed their experiences and challenges dealing with health issues created by this infection. The keynote speaker was Representative Kelly Fenton, primary sponsor of HF 2653. PowerPoint files of presentations delivered during the program (summary at https://www.med.umn.edu/news-events/umn-medical-school-leads-way-cmv-research-and-awareness) are available for MNAAP members interested in learning more about cCMV.

Research: Several active areas of research will provide new knowledge and insight into the problem of cCMV infection. In collaboration with the MDH, we are conducting a universal newborn screening study of the prevalence and outcomes of cCMV in newborn nurseries. This screening study is funded by the CDC Emerging Infections Program, and follow-up neurodevelopmental studies are funded through a March of Dimes Birth Defects Foundation grant. A study at the upcoming 2018 Minnesota State Fair, through the UMN “Driven to Discover” program, will gauge knowledge and attitudes among young women attending the fair about cCMV. This research has a tangible impact on practice. For example, a recently completed collaborative research project funded by a Children’s Hospitals and Clinics of Minnesota Internal Research Grants Program award recently lead to a change in clinical practice at the UMN Masonic Children’s Hospital Newborn nursery, where we now automatically test all newborn infants who “refer” on their newborn hearing screen for cCMV infection.

It is exciting to see so much innovative work in our community addressing the unmet need of identifying, treating, and (ultimately) preventing cCMV infections! We look forward to Minnesota leading the nation in improving pregnancy outcomes and the health and development of our most valuable resource, our children!

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