While we're all focused on the coronavirus, there are hundreds and thousands of other viruses that can do damage. Groundbreaking new research could add CMV, also known as the cytomegalovirus, to the list of things newborns are universally screened for.
“Nobody knows of it. It's like this silent virus that’s devastating,” said Stephanie Steidl, who became a mom in June 2018 to newborn Hank.
Like many new moms, Steidl didn't know much about CMV. She had a healthy pregnancy and when baby Hank came into the world, he was perfect and passed all of his tests.
“The day after he was born in my dazed state, a young woman came in with a clipboard, she wanted to test Hank for congenital CMV,” Steidl said.
She thought “what's one more test?” And if there's something she could further learn about her newborn son, why not?
“We went home, Hank was 2 weeks old when Dr. (Mark) Schleiss called to say he tested positive for congenital CMV and what that meant,” Steidl said.
For most adults and children, CMV, or cytomegalovirus, is just another virus that you can contract anywhere. But at some point in her pregnancy, Steidl got it and passed it on to Hank. It can mean permanent, sometimes life-long disabilities.
“Including hearing loss, mental retardation, cerebral palsy and other injuries,” Schleiss, a professor of pediatrics at the University of Minnesota Medical School, said. “It turns out that cytomegalovirus is the most common infectious disease in the United States that causes birth defects in babies and most people don’t know that.”
Schleiss dedicated his career to studying CMV. Pregnant women aren’t routinely tested for it, and babies generally aren’t tested at birth.
“That’s part of our whole research hypothesis that if we identify these infections in the newborn nursery, we could intervene, offer services, offer anticipatory guidance for the family,” Schleiss said.
Once children are out of the newborn stage, they're too old to be tested for it and too old to be diagnosed with it, as CMV is as common as the common cold.
“If you don’t provide intervention for a hearing-impaired child in the first three years of life, that child will never go on to have normal speech or language development so it's really critical we identify this complication,” Schleiss said.
Schleiss improved upon the test that newborns get, with almost 90% accuracy for CMV infection, and says, “If you can identify these diseases in the first days of life, it can make all the difference in the world for that baby’s outcome.”
For Hank, that CMV test meant he got the intervention he needed, and it changed the course of his life.
“He’s doing amazing because he had a diagnosis,” Steidl said. “He immediately was able to get special education services and early childhood education services.”
As his mom, Steidl is obviously his biggest advocate. She hopes to make a difference in public health and to make sure that one day, every baby will be screened for CMV.
“How many of us heard of a kid that had a learning disability and the parents never knew why or they had speech problems and it wasn’t adding up so you think about these kids and you think back. They weren’t tested for CMV and they can’t go back and get diagnosed,” Steidl said.
She has since made it her mission to share his story.