Follow Minnesota on newborn screening

Opinion editor's note: Editorials represent the opinions of the Star Tribune Editorial Board, which operates independently from the newsroom.

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A physician's instincts that something wasn't right gave the Henrikson family of St. Paul an early heads-up that Vivian, their newborn, was born infected with a serious and surprisingly widespread pathogen known as cytomegalovirus (CMV).

Infection before birth is linked to hearing and vision loss, cerebral palsy, developmental delays and other serious health problems. But after two surgeries and physical therapy, Vivian is now a third-grader who loves art, unicorns and soccer. A prompt diagnosis played a vital role in getting the early-in-life care that's helped her become an energetic little girl.

Thanks to passionate advocacy by Vivian's mother and conscientious work by Minnesota lawmakers, other families will more reliably get timely, actionable notice that their babies have CMV. After the 2021 passage of Vivian's Act, the state has added CMV to the list of more than 60 health conditions tested for shortly after birth.

This is a praiseworthy public health milestone, one that makes Minnesota a national standout. The state is the first to universally screen infants for CMV. Other states should follow its lead expeditiously to ensure that children born with this condition get the care they need.

The virus itself has been described as "ubiquitous" by medical researchers. About half of adults have been infected by the age of 40, the U.S. Centers for Disease Control and Prevention reports. Most don't feel ill, making it easy for the virus to be transmitted by saliva, urine and other body fluids by those who don't know they're sick.

According to the National CMV Foundation, about 1 in 200 babies are born infected each year in the United States. "One in every five children born with congenital CMV will develop permanent health problems (roughly 6,000 children) with as many as 400 infant deaths annually."

Early treatment and interventions are crucial. An antiviral medication could help prevent severe hearing loss. Children who develop hearing loss can be fitted with hearing aids and learn sign language. Therapy can improve motor skills and language, particularly if it's provided when a young child is developing these skills. Vivian, who has cerebral palsy, has benefited from surgery to reduce spasticity and help with movement.

But getting this care requires a diagnosis first. That can be challenging because of lagging CMV awareness.

Minnesota's universal screening helps remedy this. While it doesn't specify which child will develop serious CMV complications such as hearing loss, that knowledge is nevertheless invaluable in monitoring a child's health and, if necessary, seeking appropriate care. Families in other states should have the same early notice.

Other states have taken some steps to detect CMV in infants but none so far is casting the wide screening net like Minnesota. Thankfully, there's interest elsewhere in following Minnesota's laudable lead. Several states have contacted the state health department for more information. Hopefully, they'll act soon.

Contacted this week, Housley vividly remembered Leah and Vivian coming to her office and her surprise that so little was widely understood about CMV and its risk. Housley lauded the Henriksons for their advocacy and said she especially appreciates the Vivian Act's grassroots origins. This bill's passage happened because of moms like Leah Henrikson who are determined to make a difference.