(FOX 9) - The Minnesota Senate recently passed a piece of legislation called the Vivian Act. It’s a provision meant to bring awareness and universal screenings for cytomegalovirus, a virus that can cause life-changing consequences for 1 in 200 families, when a pregnant mother passes it on to her infant.
The legislation bears the name of a 9-year-old girl who was diagnosed at just two days old.
Leah Henrikson’s now 9-year-old daughter Vivian was diagnosed with cytomegalovirus, also known as CMV, at just two days old.
"It caused brain damage, which also causes hearing loss… she has cerebral palsy, epilepsy," Leah said.
"It’s hard to hear, and trying to catch up with the kids," Vivian added.
As Vivian fought for a chance at a normal life, her mom was fighting at the State Capitol, trying to prevent more families from going through what her family has experienced.
"It’s been a four-year journey," Leah explained. "We’re at the finish line - we’re over the finish line for what we hope to accomplish," Leah said.
The Vivian Act provides funding to educate health care providers and expecting mothers on CMV.
"If you don’t know about it, you can’t prevent it," Leah said.
The provision also lays the groundwork to make Minnesota the first state with universal CMV screenings for newborn babies.
"Testing equals diagnosis, and diagnosis equals early treatment, and the early treatment is so important in the baby’s life if it’s potentially impacted by CMV," Leah said.
"We’re trying to get the babies tested," Vivian added.
However, her goal is not yet complete.
"The last piece of this is we need the [state] commissioner to sign off on this," Leah said.
Minnesota Senate Republican Karin Housley was the chief author behind The Vivian Act.
"It got legislative support, bipartisan - both the House and the Senate and Democrats and Republicans passed it off the House and Senate floors - and it was signed by the governor," Housley told FOX 9. "So I’m 99% sure and hopeful that it gets implemented."
In a statement, the Minnesota Department of Health told FOX 9 that while the Vivian Act does not mandate universal screening for CMV, it gives the MDH resources for outreach about CMV. The bill would also allow MDH to increase fees to cover the cost of screening, if CMV gets added to the list of conditions for which newborns are screened in Minnesota. However, several steps still remain in that process.
"The newborn screening scientific advisory panel must review the feasibility of universal CMV screening, including the effectiveness of treatments or interventions," read a statement from MDH. "The panel then makes a recommendation to the commissioner, who then either adopts the recommendation, rejects or asks for further review/clarification."
Since each step can take weeks to months to complete, MDH officials say it would be at least few months before CMV screenings could be administered.
For more information on The Vivian Act, click here.