September 19, 2025

EveryStep Nurse Amanda Devereaux's Mission to Educate About CMV

DES MOINES, IOWA  --  September is Newborn Screening Awareness Month.  For EveryStep registered nurse Amanda Devereaux, it may be her favorite month of the year.  “I don't mean to oversell Newborn screening, but it's a public health masterpiece,” she says, “It's absolutely amazing what has been done with newborn screening just since the 1960s, when it really started.” 

And when it comes to newborn screening, Amanda is especially passionate about educating woman about CMV.  “I always want to talk about CMV, I always want to talk about newborn screening. So come find me; I'll talk to you about it all day long.” 

If you haven’t heard of CMV, you aren’t alone.  A recent survey found 91% of women have never heard of it.  Amanda says that needs to change. 

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"One-in-200 babies are born with CMV and a significant portion of those babies - about one-in-five - are going to go on to have some type of permanent health condition or disability,” says Amanda, “That's one in 1,000 babies. That doesn't sound like a lot, but that's about the same number of babies that are born with Down Syndrome. 

What is CMV?  It stands for cytomegalovirus and it’s one of the leading causes of hearing loss in kids.  The virus can be passed from mom to baby during pregnancy.  Half of all women have been infected with CMV by the age of 40.  For most of them, they’ll never even know they were exposed.  But the virus stays in the body for life and can cause serious complications for newborns. 

“The majority of kids who are born with CMV are going to be just fine and going to be just fine and have a typical development,” Amanda says, but “about 25% of kids born with CMV are going to have some level of hearing loss." 

In Iowa, newborns are screened for 50 different conditions at birth, but CMV is not one of them.  However, if babies do show a symptom of CMV exposure – including hearing loss or low birth weight – they are tested for the virus.  “In Iowa, we have a law that was passed in 2017.  If an infant refers on their newborn hearing screening, they must be tested for CMV by 21 days of age,” Amanda says. 

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For Amanda, CMV testing advocacy is a personal issue.  Her daughter was born with congenital CMV ten years ago.  She says her daughter falls on the extreme end of CMV diagnoses.   

"You have kids who are more medically complex like my daughter,” says Amanda, “She's got a lot of things going on including seizures. She's nonspeaking, so she uses what we call her ‘talker.’  She can click on the button on her talker, and it'll say what she wants to say. She has a feeding tube, gross motor delay.” 

After her daughter was diagnosed, Amanda began educating herself and getting more involved.  She joined the National CMV Foundation and has helped to organize – and take part in – fundraising walks in Minnesota. 

Her advocacy continues through her role as a nurse at EveryStep.  The first thing women need to know, she says, is how to lower their risk of exposure.  “The main way CMV is spread is through the urine and saliva of young children,” Amanda says, “So people who are at particular risk during pregnancy are people who already have a child at home that they're caring for, especially if that child's in daycare. The CMV is very, very common in daycare centers.” 

“We’re talking to our patients about not kissing little kids on the mouth when they're pregnant, not sharing food and utensils, washing hands really well after you change a diaper, handle children's toys that they might have been drooling on," she says, “So those are ways that we can reduce the risk.” 

The other half of the equation is educating health care providers.  “A common problem is that a lot of doctors aren't talking to their pregnant patients about this either,” Amanda says, “I looked back at my nursing book ... and there’s two sentences about it.” 

In the meantime, Amanda is going to keep spreading awareness: “if you want to know about CMV in your newborn screen, come talk to me, because I love to talk about both these things.”