Welcome to Inclusion Matters, a podcast about children's development from the Center for Inclusive Child Care.
Welcome to Inclusion Matters a podcast from the Center for Inclusive Child Care. I'm Priscilla Weigel, the Executive Director. And I'm joined today for a really important conversation about CMV and Congenital CMV. And we are really grateful to have some experts on this subject. I have Gina Liverseed with me here. She is a CMV, Nurse Specialist at the Minnesota Department of Health. And she's joining us with also with Amanda Devereaux, who is the Program Director for the National CMV Foundation. Welcome both of you. I'm so glad you're here.
Thanks for having me.
And I just would love to start with what is CMV and Congenital CMV? And why is it important? Why are we having this conversation?
Right, so this is Amanda and the CMV is a really common virus, it's actually an abbreviation for Cytomegalovirus. And this is a really common infection, most people are going to have it at some point in their life, and they probably won't even know it. They will have very mild symptoms, or they'll have symptoms that are similar to a cold, flu like symptoms, and they'll think, well, I had a cold, I had the flu, and they'll never know that it really was CMV. But Congenital CMV is actually when an infant is infected with that virus before birth. So if someone is pregnant, and they, you know, they have CMV in their body, it can go to the baby through the placenta. And so that is what is called Congenital CMV. So anytime that a baby is born, having been exposed to the virus in utero, that is Congenital CMV. And it's important because, well, for several reasons. It's common. And we'll talk about that a little bit more. But you know, about one in every 200 babies are born with CMV. It can be serious, you know, babies can have significant symptoms. And some babies actually do die from the virus. Or some children have pretty severe disabilities and are medically complex. And maybe we'll have, you know, lifelong challenges, health problems, things like that. So that's why it's important.
So I know all of our listeners right now are thinking, how is it transmitted? And how does someone get CMV? That's the big mystery here. So share information on that for us, Amanda.
Sure. So in general, CMV is spread by body fluids. You can get it from from most body fluids. But in particular, we think that CMV is mainly spread through urine and saliva, those seem to be the main ways that people are getting exposed to the virus. So especially the urine and saliva of young children and toddlers. You know, young children and toddlers aren't very good at controlling their body fluids everywhere, so that's, that's one way that we're that we're spreading this virus. It can certainly be transmitted in other body fluids too. But those, those seem to be the primary ways that that we see in CCMV spreading.
Okay. And so Gina, when you think about who the most likely, folks are that we need that need to be concerned about this, can you share a little light on that and let us know who that would be?
Sure. Well, we know that anyone at any age can get CMV. And like Amanda said, most people have had CMV at some point during their lifetime. But we know that one group of people who have a higher chance of getting CMV are those who have close contact with young children. And that's because CMV is really common in young kids. And they can spread the virus in their urine and saliva for many months after they've become infected, even if they don't seem sick. So people who work closely with young children, like in child care centers, early education settings, or people who have young children at home. So parents of young kids, especially if those kids attend child care, or think about extended family members living in a home with young children. So those are groups of people who are more likely to get CMV than those who aren't around young children a lot.
So and truly our listeners really are those exact people typically. So I'm really excited that this information is getting out to them. And when you think about, you know, Amanda, you mentioned someone who was pregnant, passing it to their their baby. How can someone who's pregnant be tested? And what are some precautionary measures that they can take?
Yeah, so pregnant people in the United States typically aren't routinely tested for CMV. Sometimes if a pregnant person has symptoms of a CMV infection, and a provider recognizes that risk, or maybe they noticed that on a prenatal ultrasound, the fetus had a concerning finding, then possibly a CMV test might be ordered. But not every pregnant person is tested. So it's really important to talk with your healthcare provider about CMV and CMV testing options, especially if you're pregnant or thinking about becoming pregnant, and you work in a childcare setting, or have close contact with kids at home.
Yes, oh, my goodness, definitely. So how would someone know you know that their baby has Congenital CMV?
So after birth, babies can be tested for Congenital CMV. And the testing itself is actually pretty easy. It just involves taking a small sample of baby's urine, saliva or blood and sending that off to a lab to see if it has any virus in it. The sample does need to be collected before the baby's three weeks old, to be certain that the baby got the infection before birth. But the challenging part about testing is knowing which babies to test because babies with Congenital CMV don't often have visible signs or symptoms of the infection. Or if they do those signs can be missed by their healthcare provider. And so that's one thing that makes identifying Congenital CMV difficult, and why the diagnosis can be missed. And so one way that in Minnesota, we are trying to help increase the number of babies that are identified is by screening all babies for Congenital CMV. And that's part of our newborn screening program. And so Minnesota parents might be alerted that their baby screening test came back and they found CMV. And that then those families follow up with their health care provider for more testing.
And so what if they don't go and then you know, and just that child then goes to child care is asymptomatic. You know. So I think that that's, that's really why we're recording these podcasts. And also, I know that you all have fantastic information at the Department of Health. And you've also shared tip sheets with us that we posted on our website. And we'll put those in as companions to this podcast when we post it on our website as well. So I just but it sounds, I think that there are things being done, in addition to the screening all babies, what are some other things that Minnesota is doing to increase awareness about this? Besides some of those written materials, are there other things that are happening that you're doing?
Yep, yep, so we have a couple outreach campaigns going, one of them is really targeting professionals. And so we have been, again, like you said, developing materials and putting them on our website, we have been reaching out to professionals through webinars, exhibiting at conferences, getting out in networking, trying to get the information to them, because a lot of healthcare providers aren't aware of CMV either. And so we really want to increase their knowledge and comfort level in talking with families and pregnant people. So that they feel comfortable having those conversations and talking about tips to you know, pass along that can help reduce risk. And then we do have a public awareness campaign that will be starting as well, with a goal of reaching, you know, the more general public, people who are pregnant thinking about becoming pregnant. So the first phase of that will be outreach through digital and social media. And then we'll have print and mass media and community events that will come after that. So just trying to get the message out, reach people with the information so that they're aware and can increase their knowledge.
Yes, and I think I don't know if you mentioned but Minnesota was the first state in the nation to screen all babies. So way to go Minnesota.
That is true. I think we feel pretty proud of that to be able to offer that to all babies who are born in Minnesota.
Yeah, that's fantastic. So when thinking about newborn screening, and that whole, you know, being the first state to screen for babies, and are there some numbers that you want to share about the success rate of that screening process?
Yeah, so since we started screening in February of 2023, we just passed our one year anniversary of screening, and we've we've identified a little over 165 babies with congenital CMV in our state. So with identification, those babies have been able to receive evaluation and treatment from their health care providers that will be monitored closely throughout childhood. And then they we've been able to connect parents with information and resources and support as well. So that's kind of a part of our newborn screening program.
Lovely. Can you tell us a little bit just in brief about the treatment process? Because I'm sure folks are, you know, worried about oh, my, it's my, my brand new baby, what what does that involve if they do receive that heightened screening concern and are diagnosed?
Yep, so typically, if a baby has CMV detected on their newborn screen, they'll get care from their primary care provider, and they'll come back in and have some urine testing done to confirm the screening diagnosis. And then there's a recommended set of evaluations for newborns typically means doing some head imaging to look for any brain changes that might be caused by the infection, an eye exam to look for eye changes, and then detailed hearing test that goes into more depth than the hearing test that all babies get after birth. And that's because congenital CMV, is the most common cause of non genetic hearing loss in childhood. And so babies need their hearing monitored very closely throughout childhood to look for any changes that might happen because of the virus. And then, and healthcare providers then kind of determine the next steps after that as far as treatment, depending on the results of those tests.
Right. That's helpful. And So Amanda, can you tell us potential outcomes for babies who gets CMV? Let's say they're, let's say they don't get the they're not picked up in the screening, the parent chooses not to screen or any of those pieces don't all fall into place nicely. What might be some of the outcomes there?
Yeah, sure. So babies who are born with CMV can have a variety of different outcomes. And it's a whole spectrum. So actually, we think most of the babies who are born with CMV, will be perfectly typical, and will develop in a very typical manner, and will probably never notice any impacts from having been exposed to the virus before they were born. However, a certain number of children maybe around 20% are going to have some consequence or health concern from the virus. So that can be anything from hearing loss. That's the most common consequence that we see. Or hearing differences. Some, some people prefer the term hearing differences. Some people will deal with that. And that will be the only thing that they deal with. Some people will have many other symptoms, in addition to hearing differences, or they might not have hearing differences at all. We've got children with cerebral palsy, vision loss, seizures, feeding issues, children who are nonverbal, so there can be neurologic consequences for these for these children. And there really is a spectrum all the way from no symptoms at all up and up into, you know, severely medically compromised children. So the outcomes really vary. And it can be very difficult to predict exactly what it's going to look like for these children.
Wow, this campaign that you're bringing forward to raise awareness is so critical. So is there a way to prevent?
Well, not all CMV infections can be prevented, but there are ways that people can reduce the risk. So we try to encourage folks to try to focus on good hand hygiene and reducing contact with the urine and saliva of young children. So some tips that are often shared are making sure to wash hands often, especially after wiping a child's nose or mouth, you think of saliva and drill in these toddlers running all over. And especially after each time you change a diaper as well. Try to avoid contact with saliva when kissing a young child so instead choose to kiss them on their forehead or give a big hug rather than kissing them on the mouth. Don't put things in your mouth that have just been in a child's mouth. So thinking about cups and straws, eating utensils, toothbrushes, or even that reflex to put a pacifier in your mouth. Yeah, yeah. And avoid sharing foods. So anything that's had a young child saliva on it, you don't want to then put in your mouth. And then last, just thinking about your environment and what's around you, and disinfecting and cleaning really well. So changing tables, toys, other surfaces that might have a child urine or saliva on them a
A lot of those things you're listing, you know, some of them are clearly guidelines and expectations for typical childcare settings that they would have to do based on licensing requirements, etc. However, when you think about some of those reflexive, like I'm thinking about when the pacifier you know, falls to the ground and the parent picks it up and puts it in their mouth to wash it off. And I mean, all of those things that are just those moments when we really need to have a heightened awareness. And I think sometimes as parents, we think, oh, we've got the same germs all of us, it doesn't matter. We can share food, we can share cups, it's not, you know, if one of us is going to get sick, we're all going to get sick might as well do. So these are really great reminders to just be aware of what you're doing and think about the consequences that could happen, following any of those reflexive kind of movements. And I know that there's so much information available. And as you noted, there's more being built and added at all times. But can you just for our listeners, as we kind of wrap up part one here, can you tell us again, where to find some more details about CMV?
Right, so we have information on our Minnesota Department of Health website, and our web address is health.mn.gov. Forward slash CMV. Amanda's organization, the National CMV Foundation also has great information and some wonderful handouts, and their website is nationalcmv.org. And then we also encourage folks to talk to their health care provider about CMV.
Fabulous. Well, I look forward to the second part of our conversation. Thank you, Amanda and Gina for being with me, and I will talk with you very soon for part two. Thank you. Thank you.
Thanks for listening. For more resources, visit us at inclusivechildcare.org
