Minnesota begins newborn screenings for a common cause of birth defects

A family looks on the podium
Leah Henrikson and her kids Vivian and Asher address reporters Wednesday. The Vivian Act was named after Leah's daughter, who was born with congenital cytomegalovirus. Minnesota officials announced the state will be the first in the nation screening all newborns for cCMV.
Michelle Wiley | MPR News

Updated 4:30 p.m.

Minnesota’s started screening all newborns for congenital cytomegalovirus. Officials say the state is the first in the nation to do so universally.

“With early detection through newborn screening, we will be able to provide these babies with the interventions and care they need to improve their future health and well-being,” Minnesota Health Commissioner Dr. Brooke Cunningham said during a press conference Wednesday to announce the screenings.

According to the federal Centers for Disease Control and Prevention, cytomegalovirus is the most common infectious cause of birth defects in the United States, with about 1 out of 200 babies born with the virus. While some don’t show any signs or have health problems, 1 in 5 will have symptoms or long-term effects.

One of the most common symptoms of cCMV is hearing loss, which can be present at birth or develop later.

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In 2021, the Minnesota Legislature passed the Vivian Act, which required the state health commissioner to make information about cCMV and preventative measures available, establish an outreach program and raise awareness of the virus among health care providers.

It also required the state’s Advisory Committee on Heritable and Congenital Disorders to review the virus for inclusion in newborn screening panels. In January 2022, the recommendation to add it was made, and approved by then-commissioner Jan Malcolm shortly after.

State officials began screening for the virus on Monday.

“Although we're the first state, I know the passion from these families is so contagious that we'll see more change across the country. Do not underestimate the power of a mom on a mission,” said Leah Henrikson, who led efforts to pass the act named for her daughter, Vivian.

“All families deserve the right to know the facts about CMV, how to prevent it, and to have the opportunity to treat at birth,” Henrikson added.

Vivian, who attended the press conference, was identified with congenital CMV shortly after birth, and was treated with antivirals, her mom said.

"She hasn't stopped working hard in therapy through surgeries in school," Henrikson said. "She's fallen down a lot, but she laughs and gets back right back up."

Cytomegalovirus can be passed to the child during pregnancy, and parents may not even know they have it. Most people with the virus have no symptoms, per the CDC.

Children often carry the virus without symptoms and spread it through body fluids, like saliva. Parents and caregivers can pick up the virus when sharing food or utensils with the child.

According to the National CMV Foundation, several other states, including Illinois, Iowa and New York, provide targeted newborn screenings and education about the virus, but Minnesota is the first to enact universal newborn screenings for it.

MDH officials said that screenings will help identify infants who are at risk for hearing loss, and would benefit from “early access to interventions such as sign language, hearing aids and cochlear implants.”

According to MDH, this virus is “the newest addition to the more than 60 conditions for which Minnesota newborns are screened.”

“Shortly after a baby is born, nurses prick the heel of the baby and place several drops of blood on a specimen card,” said Jill Simonetti, manager of the Newborn Screening Program at the Minnesota Public Health Laboratory. “That is sent to MDH’s public health laboratory for analysis. If a condition is detected, our genetic counselors alert the child's health care provider who then initiates a conversation about appropriate follow up with the parents.”

Health officials also conduct hearing and heart screenings. Cytomegalovirus is the first infectious disease to be added to the panel.