CMV can cause birth defects, but prevention steps are considered “burdensome,” say doctors
“When you talk about it, it seems like it’s really rare,” Wiedel said. “But it’s not. A lot of kids have CMV.”
“That’s the hardest piece for me is that this is a preventable, prevalent, quiet disease.”
But, now, a small community of mothers and medical workers are trying to make CMV awareness a little less quiet.
Cytomegalovirus, or CMV, is the most common nongenetic cause of childhood deafness in the country. Every year, approximately 30,000 babies are born in the United States infected with CMV, and as many as 8,000 of those children suffer lifetime consequences from the disease — which can also include blindness, cognitive delays and microcephaly. As many as 400 infants die every year from CMV, according to the National CMV Foundation.
It is vastly more common than the Zika virus, which prompted alarm last summer for its potential to cause birth defects. But, while Congress invested $1.1 billion in fighting Zika, funding for CMV lags behind, and numerous studies show that as many as 85 percent of expectant mothers have no idea what CMV is. The American College of Obstetricians and Gynecologists does not advise doctors to talk to expectant mothers about CMV — despite the fact that it is an easily spread virus that is present in nearly every elementary school and day care center in the country.
At Children’s Hospital Colorado, physician assistant Shannon Hughes has developed an outpatient clinic for kids dealing with the aftereffects of CMV. The clinic has served about 40 kids in the past two years. Nearly all of the parents she meets had never heard of CMV before finding out that it would forever alter their children’s lives.
“Obviously, that has a big impact on them emotionally that they think they did something wrong and should have prevented it,” she said.
Neonatal nurse practitioner Erin Mestas, who also works at Children’s as well as at Poudre Valley Hospital, is also trying to raise awareness among both mothers and health care workers about CMV.
“There needs to be more education about CMV risk reduction,” Mestas said. “I think childbearing women need to be more educated.”
In some ways, CMV’s ubiquity accounts for its invisibility.
Most adults have been exposed to CMV at some point in their lifetimes, meaning they have antibodies to fight off a new CMV infection. For women with CMV antibodies, then, being exposed to the virus while pregnant is usually no big deal.
But there is no vaccine for CMV, and a small subset of women don’t have the antibodies. If they catch CMV while pregnant, they will likely pass the infection onto their unborn child, who is then at risk of developmental impairments. The earlier in her pregnancy a vulnerable mother catches CMV, the worse the outcome likely is for the child.
Because CMV is most common among kids, pregnant women who already have children or who work in schools or day cares are particularly at risk.
The ways to prevent a CMV infection are familiar to anyone who has ever tried to dodge a cold during flu season. CMV spreads through saliva or urine, so pregnant women should wash their hands frequently — especially after changing diapers — and avoid kissing their toddlers on the mouth or sharing food or drinks with them.
In a bulletin published in 2015, the American College of Obstetricians and Gynecologists — the country’s largest association for women’s health doctors — wrote that these prevention steps “often are considered impractical or burdensome,” which is why the organization does not recommend doctors talk to expectant mothers about CMV.
“At present, such patient instruction remains unproven as a method to reduce the risk of congenital CMV infection,” the bulletin states.
But recent studies have challenged that analysis.
A study in Utah published last year found that women were generally receptive to practicing CMV prevention once they understood the consequences. And a study from 2015 found that women who had never been exposed to CMV before were significantly less likely to contract the virus while practicing the prevention methods than if they didn’t.
Plus, as Wiedel points out, women can be tested before getting pregnant to determine if they are at risk for a first-time CMV infection, and, if they contract the virus while pregnant, there is a drug they can take that may help limit the damage it causes. Children born with CMV can also have better outcomes if started on treatment right away. But all of this means that means doctors would need to be more proactive in talking about and testing for CMV.
“I think part of the ignorance is willful ignorance,” Wiedel said.
Anna is now almost 2 years old and, though she began walking later than most children, she now happily races across the living room floor. Cochlear implants have brought her hearing — she still hears nothing when they are off — and Anna is both learning to talk and how to use sign language.
Those are blessings considering what could have been, Wiedel said. But, while she wouldn’t want to change her daughter, Wiedel said it is frustrating to think that, had she known more while pregnant, she could have saved Anna from some of the struggle.
Wiedel now acts as an informal resource to friends, relatives and neighbors with questions about CMV. It’s a role she enjoys but wishes she didn’t have to inhabit.
“I have to be the educator,” she said. “And it’s exhausting.