Abby Stahowiak’s second child was disabled by a little-known virus. Now the Minneapolis mom wants legislation to compel the Minnesota Department of Health and physicians to take it more seriously.
Cytomegalovirus, or CMV, is more common than other well-known causes of birth defects, but Stahowiak said her clinicians didn’t suspect it — even though she had a bad illness during pregnancy, and her son had a classic symptom of hearing loss after his December 2015 birth. He later was diagnosed with cerebral palsy, a muscle disorder associated with the virus.
“The sooner [treatment starts] the better,” she said. “We lost, like, 9 weeks. So we will wonder for the rest of his life what difference it will make for him.”
Fifteen state lawmakers have sponsored a House bill — nicknamed the Vivian Act after a girl with CMV — that would require doctors and the health department to inform patients and the public about the virus. Nine other states have similar laws in place.
Despite being common, CMV received little attention in the past because there was no known treatment, said Dr. Mark Schleiss, a leading expert on the virus at the University of Minnesota. “Doctors are reluctant to screen for things that they can’t really do anything about.”
Schleiss said that attitude needs to change now that antiviral drugs have been proven to reduce hearing loss and neurodevelopmental problems caused by infection. About 40,000 babies are born with CMV each year, though most don’t develop symptoms.
Awareness also is needed so that expecting mothers can reduce their risks of getting the virus, which they can then pass along to their newborns in the womb or during breast-feeding, Schleiss said.
The virus spreads via bodily fluids, and often is transmitted by young children to their parents. One prevention tip as a result is for expecting mothers to avoid sharing drinking cups with their children.
The virus also spreads among adults through sexual contact.
Multiple companies are testing vaccines, though one earlier this year had to report a failed clinical trial in which its version failed to improve patients’ health. Schleiss said he is evaluating future vaccines as well as a blood test that could be used to screen newborns for CMV.
Stahowiak, a pharmacist for Allina Health, said doctors and patients already can be overloaded with information. However, she said they need to hear more about CMV because it is common, and because treatment might prevent children from suffering lifelong disabilities.
Stahowiak said she was treated like a stereotypical “irrational postpartum” mom when she expressed concerns about her newborn’s health to doctors and nurses who weren’t familiar with the virus.
“With awareness,” she said, “things could have been different.”