For Kristen: Being part of research is a way to advocate for the future

Kristen is a mother and a doctor in Brainerd, Minnesota, where she cares for families across her largely rural community. But when her child was born with a poorly understood condition, she found herself experiencing healthcare from the other side. This experience deeply shaped how she views participating in research, which she calls "a great way to advocate for developing science."

That perspective became deeply personal when Kristen's newborn screened positive for congenital cytomegalovirus (cCMV) infection.

cCMV is the most common infection passed from mother to baby before birth and a leading cause of childhood hearing loss. Because most babies show no signs at birth, it often goes undetected. A positive result can bring uncertainty for any parent, even one with a medical background. Although most infants with cCMV have normal outcomes, some develop long-term health problems that are difficult to predict at birth.

Kristen chose to enroll her baby in a research study, knowing her family's experience could help answer questions about long-term outcomes for this condition that are still not well understood.

A screening that started at the University of Minnesota

Dr. Mark R. Schleiss, a pediatric infectious disease expert at the University of Minnesota Medical School, has been a pioneer in cCMV research for decades. His team showed that cCMV could be detected using the dried blood spot samples already collected from every newborn, which made statewide cCMV screening practical and affordable.

In 2016, Schleiss joined forces with Minnesota families affected by cCMV to advocate for policy change at the State Capitol. Their work led to the Vivian Act, passed in 2021 and named for a Minnesota child born with cCMV. The Vivian Act made Minnesota the first state to screen every newborn for this virus beginning in 2023, and it’s how Kristen's baby received an early diagnosis.

Still learning

With only Minnesota (and more recently, Connecticut) requiring universal screening, there is still much to learn about caring for babies who test positive. As both a parent and a physician, Kristen understands the value of every family's contribution.

"This is new territory with the screening, so it is helpful to get as much data as we can," she says.

Enrolling an infant in the cCMV follow-up study (led by Dr. Schleiss and Dr. Meghan Swanson) at the Masonic Institute for the Developing Brain felt like a big step, but Kristen says the study team made it easy for her family.

"I can't speak enough about how grateful I am that everything went so smoothly, and that the study team had really thought about every single thing and offered us so much assistance."

From research to real change

For Kristen, her baby's story shows what research can do: a study proved testing was possible, advocacy made it law, and now families like hers can learn early in childhood how cCMV might be affecting their babies and what their long-term outcomes may look like.

Her work with patients helps her see what keeps many families from joining studies, including travel to appointments, finding childcare, and finding the time. That makes her grateful her family was able to take part, and she hopes others who can will consider it too.

“I am very thankful that we are able to do what we can to help,” she says.