'Vivian Act' takes aim at underrecognized virus in babies

Seven years ago, the Henrikson family was minutes away from taking newborn Vivian home from the hospital. Then, an astute physician doing a final check on the two-day-old infant called a halt to the discharge.

"Things just kind of aren't adding up,'' Leah Henrikson remembers him saying. Leading up to that, Vivian had a constellation of symptoms — some jaundice, a rash called petechiae and had failed a hearing screening — but nothing that said, "Oh my gosh, we have a really sick baby on our hands."

But they did. Vivian had congenital cytomegalovirus (CMV), an infectious disease that the St. Paul family hadn't heard of but is "the leading cause of birth defects and developmental disease in the United States," according to the Maternal and Child Health Journal. Testing revealed the need for a blood transfusion. Vivian spent the next three weeks in the neonatal intensive care unit.

Henrikson is grateful for a doctor, one who just happened to have infectious disease training, who connected the CMV dots. But she also wants to ensure that other babies are diagnosed swiftly. Fortunately, a bipartisan array of Minnesota lawmakers recently heeded the call for action from Henrikson and other advocates, passing a law named for Henrikson's daughter.

The Vivian Act establishes and funds outreach to educate Minnesota parents and medical providers about this underrecognized infection. The measure could also make the state a pioneer in adding CMV to the list of more than 50 disorders tested for in the blood spot taken from newborns' heels.

While the law stops short of putting CMV on this list, legislators directed a state panel that recommends additions to consider doing so expeditiously. The Star Tribune Editorial Board urges CMV's inclusion, as well.

If CMV is added, it's believed Minnesota will become the first state to do universal screening for it. Hopefully, other states will follow, ensuring that CMV babies are diagnosed early and get treatment enabling them to lead an active life.

Vivian, now 7, has cerebral palsy, hearing loss, developmental struggles and has epilepsy. But her mom credits the "army" of therapists and medical providers, who began work in her infancy, for her progress. The little girl started reading at 4, for example, and can kick a ball. "My sister is really strong,'' said Asher Henrikson, 9.

Many readers of this editorial have had CMV but probably were unaware of it. The U.S. Centers for Disease Control and Prevention (CDC) estimate that "over half of adults have been infected with CMV by age 40." Transmission generally occurs through direct contact with body fluids, such as saliva, urine, blood, tears, semen and breast milk.

Healthy people generally don't feel ill. But this pathogen can cause serious illness in those with weakened immune systems or in babies whose mothers are infected or reinfected during pregnancy. At high risk: Mothers frequently around young children or those who work with them.

"About 1 out of 200 babies is born with congenital CMV," the CDC reports. Of those, 1 in 5 will have babies will have symptoms or long-term health problems, which include hearing and vision loss, developmental and motor delays, seizures and microcephaly.

One reason broad screening hasn't yet occurred: questions about whether the blood spot test can reliably pick up CMV. But a study published in February led partly by University of Minnesota Medical School researchers showed an 86% sensitivity, much higher than previously reported.

Treatment for infected infants includes antiviral medication, which may help prevent severe hearing loss. Therapy can help develop language and motor skills. A prompt diagnosis can also prevent the anguish of what can be an elusive diagnosis.

Henrikson is grateful for Vivian's early care and, understandably, wants the same for others. "I really just believe in my heart that all babies deserve the same chance to get treatment and get the chance to live their lives to their fullest potential,'' she said.