When the Massachusetts House voted last month to start screening all newborns for a particular virus they can contract in utero, Vanessa Colleran was at work and couldn’t be there to celebrate.
Her husband Peter FaceTimed her from the marble hallway, then walked the phone into the House chamber alongside one of the lawmakers who supported the measure.
“I cried so many times thinking about it and watching,” Vanessa Colleran recalled later. “It means so much to families like ours to finally feel heard and seen.”
The Collerans lost their infant son Logan to a virus called cytomegalovirus, or CMV, after a four-month stay in neonatal intensive care. CMV is a common virus that rarely causes symptoms, and otherwise healthy people may not even know they have it.
But when CMV is passed to a developing fetus during pregnancy, it can lead to hearing loss, health problems and birth defects. Congenital CMV, as it’s called when an infant is born with CMV, is the most common infectious cause of birth defects in the country.
About one in 200 babies, in Massachusetts and nationally, is born with congenital CMV. Of those, about one in five will have long-term health problems or hearing loss.
“I had never heard about CMV before having Logan,” Vanessa Colleran said. “The first time I even heard it mentioned was about a week before I had him. I was having an ultrasound and I was told by the doctor that something was very wrong.”
The Collerans are part of a coalition, with doctors and other families, that’s been advocating for legislation to create a universal screening program for congenital CMV in Massachusetts, so all babies born here would be tested for the virus.
The bill, which also calls for doctors to give expecting families information on CMV and how to prevent it, passed the Massachusetts House on May 20 and is now pending before the Senate. It was first filed in 2021, and advocates hope to see it become law this year.
Dr. Margaret Kenna, who directs the hearing loss program at Boston Children’s Hospital, remembers going with a colleague to the state officials who handle newborn screening, suggesting a CMV test 20 years ago.
The state wasn’t ready to start widespread CMV screening at the time. So Children’s launched its own effort to screen babies that failed their newborn hearing test, and Kenna said the idea caught on with some other hospitals.
“There’s no real guidelines,” she told GBH News. “A lot of people are not quite sure what to do when they get a positive test. There’s a lot of bumps. Although it’s better than it was, there needs to be, I think, some sort of mandated testing to help people know what to do with those results and who to call and all that jazz.”
Dr. Michael Cohen started targeted CMV screening at Massachusetts General Hospital about a decade ago, starting with babies in neonatal intensive care who didn’t pass their newborn hearing tests.
“It not only matters because it’s important for families to know why their child has hearing loss, but it matters because CMV can be prevented,” said Cohen, director of the Multidisciplinary Pediatric Hearing Loss Clinic at Mass. Eye and Ear. “It can be treated with medication if given early enough, and it has to be treated early and diagnosed early to even know that CMV is the cause.”
Cohen said women who contract CMV during their pregnancy often get it from contact with little kids who have been infected and carry the virus in their bodily fluids. He said there’ are simple steps that can be taken to reduce the risk of infection during pregnancy, like washing hands after changing a diaper or not sharing utensils with a toddler.
Minnesota and Connecticut have passed universal CMV screening laws. According to a 2023 report from the Center for Health Information and Analysis, a Massachusetts state agency, eight other states have passed laws requiring targeted screening for newborns who fail their hearing test.
That report showed that the extra screening required under the bill here could bump up insurance premiums somewhere around $2 per year per person.
The universal screening program the bill proposes would catch nearly all infants in Massachusetts infected with congenital CMV, the CHIA report said, allowing for earlier treatment and therapies. But because around 80% of children with congenital CMV don’t develop problems from the infection, the idea also “raises concerns about overdiagnosis and overtreatment,” including added stress for parents whose babies are otherwise developing as they should.
Danielle Lavon’s son Ryan, her third child, was born in 2022. He had a CMV swab after he failed his newborn hearing test, but Lavon said the family never got the results. At a follow-up appointment a few months later, his hearing was totally gone. He now has cochlear implants.
Of the pending legislation, Lavon said, “It is hard to put into words how meaningful something like this is to families like ours, knowing that had there been a universal screening process, our case would have been flagged and we would have been able to give him antiviral medication to potentially save his hearing.”
“This will change the course of children’s lives across the state and give parents the choice of care and information they need in order to support their kids,” she said.
