Photo by Shutterstock
Newborn Baby
Earlier this month, Minnesota became the first state in the country to approve a universal screening program for congenital Cytomegalovirus (cCMV)—a common but potentially severe disease affecting newborns. This change came about through legislation known as the “Vivian Act,” a bill proposed primarily by parents of children affected by cCMV.
The components of the Vivian Act and this new universal CMV screening program started to come together in 2016, through a connection between parents and a pediatrics professor at the University of Minnesota. Mark Schleiss, MD, the American Legion and Auxiliary Heart Research Foundation professor, says the effort was inspired by a conversation he had with a patient about various legislation relating to newborn health across the country.
So Dr. Schleiss banded together with a group of parents, namely Leah Henrikson whose daughter Vivian was born with CMV, and Stephanie Steidl, whose son Hank was also a CMV baby, and introduced the idea to lawmakers. State senator Karin Housley then authored the bill for the Health and Human Services budget. In early February 2022, Minnesota Commissioner of Health Jan Malcolm approved the recommendation to universally add the cCMV screening in Minnesota.
Common in Adults, Dangerous for Babies
CMV is a common virus that affects many people throughout their lives but it is of particular concern for those who are pregnant, for the possibility of passing it on to their babies. CMV can cause developmental delays, seizures, and permanent hearing loss in children, among other health problems.
While CMV may not be a big deal for healthy adults, or even for younger children, it can make all the difference for a fetus or a newborn. When babies are born with CMV, they are known to have congenital CMV—“congenital” being the medical jargon for “present at birth.”
“There’s something critical when [the virus] crosses the placenta and affects the baby in utero,” says Dr. Schleiss. Before the child is born, CMV has the potential to affect brain development and hearing ability.
The virus itself is a bit of a conundrum—it’s extremely common, but often under-recognized. It can present serious problems, especially in newborns, but most instances of CMV pass with little to no consequence or symptoms.
According to the National CMV Foundation, about one in every 200 babies is born with congenital CMV. But in those children, only about 20 percent will develop a delay in motor or cognitive skills or suffer from hearing loss as a result.
“This is something that makes CMV different from other screenable diseases,” says Dr. Schleiss. “[Those screened diseases] are primarily things with bad outcomes, but that’s not true with CMV. Most babies with CMV have a normal outcome.”
“It’s an uncertain prognosis,” he adds. “So let’s monitor all of them, just in case.”
So if its severity is rare, then what’s the big deal with this effort to increase screening? The biggest justification for screening all newborns is simply to help the kids who may develop the disease, Dr. Schleiss says. Screening helps our medical system make sure that no children slip through the cracks.
Prior to the Vivian Act, babies were only tested for CMV if they presented certain symptoms or showed signs of hearing loss at birth.
Intervening Early
“The insidious thing is that some babies can pass the hearing test but still have CMV and develop issues associated with it later in childhood,” Dr. Schleiss says. Many times, had these children been screened and shown to be positive, doctors could have intervened sooner.
When CMV is caught early, doctors monitor children more closely for developmental delays or hearing loss, allowing them to start a specific therapy to lessen the negative effects of CMV. This is what happened to Leah Henrikson’s daughter, Vivian, the namesake for the bill. Doctors caught Vivian’s case of CMV before her parents took her home from the hospital after birth. With brain damage, hearing loss, and cerebral palsy caused by CMV, Vivian was put into physical and occupational therapy at just 2 weeks old.
Testing for CMV is a simple and quick procedure that has the potential to be performed at the same time as a myriad of other newborn screening tests. Though CMV may be easier to detect in urine or saliva samples, Dr. Schleiss says it’s likely that Minnesota will check for it through a blood test.
The biggest advantage of the blood test screening lies in its practicality. When systems are easier and more efficient, more health care professionals get on board with administering them. Since every newborn already gets a blood test—known as the "heel stick”–the screening for CMV is a simple addition.
While universal CMV screening for newborns is a major part of the Vivian Act, the bill includes another facet of curbing CMV’s negative effects: education.
“The Vivian Act doubles down on the educational gap on CMV,” says Dr. Schleiss. In fact, there is specific funding for an educator position to connect with obstetricians, parents, and other health care providers to further the awareness of CMV.
While pregnancy books, doctors, and general society warn women of the dangers of eating sushi or picking up the cat litter while pregnant, the conversation rarely gets to a point of discussing the dangers of CMV. Passed through saliva and other bodily fluids, it’s the most common viral infection—and only 9 percent of women know about it, according to the National CMV Foundation.
But more and more states are offering CMV education. The foundation cites that Minnesota will be the 14th state to provide education and raise awareness of CMV to pregnant women. Minnesota will be the first to adopt universal CMV screening in newborns.
“The discoveries that have gotten us to this point are certainly not trivial,” Dr. Schleiss says. “But to get to the point where we can translate it to practice is a big step forward.”
A History of Infant Screening
But this kind of progress in healthcare isn’t unprecedented here in Minnesota.
According to the National Institute of Child Health and Human Development (NICHD), newborn screening tests came about in the 1960s, after Dr. Robert Guthrie developed the screening test for a disorder called phenylketonuria, more commonly known as PKU. Dr. Guthrie was a graduate of the University of Minnesota.
Plus, personal stories like the Henriksons' are part of why Dr. Schleiss thinks the bill has come so far in Minnesota.
“It’s really grass roots. That’s what’s so cool about this,” Dr. Schleiss says. While legislators are willing to talk with professors like him, it’s the call from the public, from constituents that is the most compelling.
But as these parents and Schleiss hand off the congenital CMV screening baton to MDH, Dr. Schleiss says he’s confident that they will implement it with care.
“I think the Minnesota Department of Health is one of the best in the country,” Dr. Schleiss said. “It’s something every Minnesotan should be proud of.”
