Unlike most people, Jessica Wright had actually heard of cytomegalovirus (CMV) when her infant son Jackson was diagnosed with it. Her elder son, Colton, was tested for CMV at birth after failing his hearing screening.
Although congenital CMV is a common cause of hearing loss in infants, Colton’s was found to have a different origin.
Still, there was plenty Wright didn’t know about this widespread virus. She didn’t know, for instance, that:
- if a person happens to contract CMV for the first time during pregnancy, the infant can be born with congenital CMV, which can lead not only to hearing loss but also to vision loss, seizures, cerebral palsy, and developmental delays.
- for the minority of adults who haven’t had CMV, it can be transmitted via saliva or urine—in many cases the saliva of a child like Colton who attends daycare or preschool (where CMV is commonly transmitted between toddlers).
- that early screening for CMV can enable families and health care providers to mitigate, prevent, or plan for its most detrimental effects.
Last year, Wright was one of several parents who joined Mark R. Schleiss, an M Health Fairview pediatric infectious disease physician and professor of pediatrics at the University of Minnesota Medical School, in lobbying the Minnesota State Legislature for routine CMV testing of newborns in Minnesota.
Following passage and approval from the Minnesota Department of Health, the Vivian Act—named for another Minnesota child born with CMV—became law last year and CMV testing was added to the list of conditions for which newborns are screened, effective January 1, 2023. Screening began in early February.
That made Minnesota the first state in the country to screen newborns for CMV. The Vivian Act also provides resources to families and education to health care professionals about CMV.
A ‘ubiquitous’ virus
CMV is extremely common—“ubiquitous,” says Schleiss, who has studied the virus for decades. In fact, it’s the most common infectious cause of birth defects in the United States, according to the Centers for Disease Control and Prevention (CDC).
Schleiss estimates that at least half of Americans have contracted CMV by age 30 (rates are even higher in less-developed countries). And most people who are infected with CMV are asymptomatic; they’ll never know they’ve had it.
Pregnant people can unknowingly contract CMV and pass it along to their babies. One baby in 200 is born with congenital CMV, according to the CDC.
Of those babies born with CMV, some 15 to 20 percent will experience serious ramifications, but many of those can be mitigated with early intervention. In Jackson Wright’s case, that meant a regimen of the antiviral medication valganciclovir, which has shown promise in arresting hearing loss in infants born with CMV.
Proactive vs. reactive
Much of Schleiss’ pioneering work—from his research on the virus to CMV education and outreach efforts—is supported by philanthropy. That includes his endowed American Legion and Auxiliary Heart Research Foundation Chair, the Jamie McNew Memorial Endowed Lectureship, the Skelton-Harris Education Fund, the CMV Research and Education Fund (a generous donation from the Haukos family), and a Minnesota Vikings Community Health Impact in Pediatrics grant.
Schleiss began advocating for adding CMV to the list of conditions for which newborns in Minnesota are screened in 2016. “The legislative world is a ... really different world. But at the end of the day, we had broad support across both the House and Senate, across both parties,” Schleiss says of the Vivian Act.
Identifying babies born with a CMV infection early allows families like the Wrights to be proactive as their children grow and monitor their hearing and developmental milestones closely.
Jessica Wright, who shared her family’s experience with lawmakers and others to help Schleiss advocate for the Vivian Act, wants all Minnesota parents to feel as empowered as she did.
“We know what to look for, what to get ahead of,” she says, “[so] we can have services in place.”
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