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.

While congenital CMV is a common cause of hearing loss in infants, Colton’s hearing loss was found to have a different origin.

But there was plenty Wright still didn’t know about this widespread virus. She didn’t know 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 vision loss, seizures, cerebral palsy, and developmental delays.

She didn’t know that, for the minority of adults who haven’t already 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.

And Wright didn’t know 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 M Health Fairview pediatric infectious disease specialist Mark R. Schleiss, M.D., a 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 by the Legislature in 2021, the Vivian Act—named for another Minnesota child born with CMV—received final approval from Minnesota Department of Health Commissioner Jan Malcolm in January of this year.

That made Minnesota the first state in the country to approve universal CMV screening of newborns, along with outreach to families and health care professionals.

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.

The more widely known and feared parasitic infection toxoplasmosis, about which pregnant patients are often warned, affects just one or two babies in 10,000 annually, Schleiss points out, while one baby in 200 is born with CMV.

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. But when a pregnant person contracts CMV, particularly in the first trimester, consequences for the infant can be profound.

Of the babies born with CMV, some 15% to 20% will experience serious ramifications, but many of those can be mitigated with early intervention, Schleiss says. In Jackson’s case, that meant a regimen of the antiviral medication valganciclovir, which has shown promise in arresting hearing loss in infants born with CMV.

Jackson is now 1 year old and doing well overall. He’s a little behind milestone-wise but is catching up, his mom says. And he loves to laugh, chase after his brother, and spend as much time in the water as possible.

Wright hopes the Vivian Act will help educate parents, physicians, and midwives about the virus. “I have a great OB; I had great care,” she says. “But never once was CMV mentioned. We’re all told not to empty the cat’s litter box [because of potential toxoplasmosis infection]. But no one is told, ‘Hey, maybe don’t eat off your toddler’s plate, or [don’t] drink out of each other’s cups.’”

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, and a Minnesota Vikings Community Health Impact in Pediatrics grant.

Schleiss’ legislative activism was a natural result of his 30-plus-year career in the clinic. He had been actively advocating the Legislature for universal CMV screening of newborns since 2016.

“The legislative world is a ... really different world,” Schleiss laughs. “But at the end of the day, we had broad support across both the House and Senate, across both parties.”

Newborn CMV screening is conducted using the dried blood spots—made with that tiny amount of blood taken from a baby’s heel shortly after birth—that are already used to test infants for more than 60 other diseases, including phenylketonuria and cystic fibrosis.

As the Minnesota Department of Health now prepares to implement universal CMV screening through the Vivian Act in 2023, it’s predicted that more than 300 newborns will be found to have congenital CMV each year. Identifying babies born with a CMV infection early allows their families to be proactive rather than reactive as their children grow and monitor their hearing and developmental milestones closely.

Wright volunteered to share her family’s experience last year to help Schleiss advocate for the Vivian Act because she wants all Minnesota parents to feel similarly empowered.

“We know what to look for, what to get ahead of,” Wright says, “[so] we can have services in place.”