On episode 28 of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Wendy are joined by Amanda Deveraux. Amanda is a public health nurse and is currently the program director for the national CMV foundation. Amanda became passionate about eliminating CMV with when her daughter Pippa was born effected by the virus in 2015, in 2017, Amanda and her family successfully lobbied for CMV legislation in Iowa. Amanda serves as chair for the congenital and inherited disorders for her state.

Tatum and Wendy talk to the National CMV Foundation Director, Amanda Deveraux. We discuss the cytomegalovirus which is a very common virus that can have significant impact on babies including hearing loss. We talk about transmission, prevention, symptoms, parent led legislation, treatment, and the potential for a vaccine for CMV.

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Resources from this episode:

• National CMV Foundation Website: nationalcmv.org
• National CMV Podcast: https://www.nationalcmv.org/resources/podcasts
• https://www.nytimes.com/2016/10/25/health/cmv-cytomegalovirus-pregnancy.html
• CDC Information: https://www.cdc.gov/cmv/index.html

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Special thanks to John McCortney & Michael McCortney for their work recording All Ears at Child’s Voice episodes. Episodes of All Ears at Child’s Voice are graciously edited by John McCortney.

Disclaimer: Child’s Voice is a listening-and-spoken-language program for children with hearing loss. All Ears at Child’s Voice: A Hearing Loss Podcast is a resource provided by Child’s Voice. Reference to any specific product or entity does not constitute an endorsement or recommendation by Child’s Voice. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Child’s Voice employees are those of the employees and do not necessarily reflect the view of Child’s Voice.

 

Dr. Michele Wilkins:

Welcome to All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. I am Dr. Michele Wilkins, the Executive Director at Child’s Voice. Child’s Voice is celebrating 25 years in just a few days. So, we hope you will be able to join us. On February 20^th you can join us virtually for a smiley worthy celebration. Although actually we will be joining you since we are all online. This virtual event will celebrate and showcase how we have achieved excellence through advocacy, collaboration, expertise, community, commitment, and passion. And will feature interviews, photos, videos, and musical guests. At the birthday we will present the “Voice from the Heart” award to Elsa Auerbach, our first teacher. Elsa truly embodies not only the mission and goals of Child’s Voice but also the priorities of this award. There will be an online silent auction and more fun surprises from our alumni and guests. Musical guests include Ms. Sally from the Merritt School of Music, the Elmhurst College Jazz band, and Pianist Veronica Engleman, she will join us from Europe! And she also wears a cochlear implant. See you on Saturday, February 20^th. And now to start the show.

Wendy:

Welcome to another episode of all Ears at Child’s Voice, we aim to connect parents of children with hearing loss, with the professionals who serve them, we’re your hosts I’m Wendy Deters

Tatum:

And I’m Tatum Fritz. And our guest today is Amanda Devereaux. Amanda is a public health nurse and is currently the program director for the national CMV foundation. Amanda became passionate about eliminating CMV with when her daughter Pippa was born effected by the virus in 2015, in 2017, Amanda and her family successfully lobbied for CMV legislation in Iowa. Amanda serves as chair for the congenital and inherited disorders for her state. She lives in Des Moines with her husband and her two children. Amanda, thank you for joining us today. We are so excited to learn from you.

Amanda:

Thanks for having me, happy to be here.

Wendy:

Most of our conversation today is going to be on CMV, which is the abbreviation for cytomegalovirus, which is a kind of herpes virus, which usually produces very mild symptoms in an infected person, but may cause severe neurological damage in people with weakened immune systems and in the newborn. So we’re talking about CMV today on this podcast, because one of the many complications of CMV can be hearing loss. This episode may bring up as many questions as it does answers about CMV because it’s a really complex issue for families and professionals. So we’re not going to go too deep into transmission of the virus, and this is only an hour long podcast. So if you’d like to learn more, we really encourage you to talk to your healthcare professionals and also visit the national CMV website, which is www.nationalcmv.org. This is an excellent resource that can answer many of your questions about CMV. So hopefully today we give you an overview and tap into Amanda’s amazing expertise. Um, but we expect these conversations will continue. So thanks for joining us today.

Tatum:

Would you mind sharing with us, like a little bit about your role at the national CMV foundation?

Amanda:

I am the program director, so my day to day tasks are pretty variable, but I do everything from just answering questions that come in from the website or on Facebook, um, help a little bit with the social media. Um, and then I run a few of our programs. We have an ambassador program called the CMV Community Alliance. So I run that and work with those volunteers, we do some research awards and some public health grants that I help with as well, and then we’re just always looking at our educational materials that how can we get that out to people? So we are a mighty team of two, we have two paid staff, so, it’s really whatever needs to be done to, to continue the mission of eliminating, um, the disabilities and deaths caused by congenital CMV. So it’s, it varies every day, but, um, it’s very interesting and it’s, great work.

Tatum:

Wow. That’s amazing to be doing so much with two people.

Amanda:

Yeah, it’s pretty crazy, but we, we really enjoy it.

Wendy:

That’s great. I also forgot to mention that the national CMV foundation has a podcast itself. So that would be another great resource for listeners to check out some of your episodes. And you can find a link to the podcast on that cmv.org website.

Amanda:

Absolutely.

Tatum:

Cool. And then I’m also curious, what does it mean to be the chair for the congenital and inherited disorders for your state? What does that look like?

Amanda:

It’s a long name, right? So that is the advisory committee. And most States, my understanding is they have an advisory committee like this and they are the people who can help make decisions about newborn screening and all sorts of congenital and inherited disorders. So that would be disorders that children are born with. That’s what we mean when we say congenital. So we get together quarterly and we discuss everything from what’s happening in the state in terms of screening and disabilities and disorders that children are born with. And then we also have some subcommittees that work on newborn screening. So whenever somebody wants to add something to the screening panel in Iowa, they can submit a request to our committee and we are the ones who review that first. And so if we, as a committee, if our subcommittee thinks that it should be added, then we make that recommendation to the department of public health. So that’s one way that disorders can be added in our state. And so being the chair for that just really means that I am in charge of making sure that the meetings happen and, and progress. I’m almost done with my term, so I’ll almost be done as the chair, but I’ll still continue to serve on the committee as a parent representative.

Tatum:

We’ll get more in-depth than in all of this soon, but before we jump into the main part of our discussion, we like asking our guests, um, for a story from the past week. So it could be something cute, something funny, something heartwarming it could have to do with your family or something else. Um, does anything come to mind that you’d like to share?

Amanda:

It’s been such a crazy time? I feel like we’re not doing anything very right now. I’ll share a story. Um, this is kind of a fun, fun little thing. There’s actually a church here in Des Moines that does a special needs Santa Claus. And so usually my daughter has special needs and usually we head over to this church that has the Santa Claus and they also have a signing Santa. And, um, this year they couldn’t do that obviously, but they did drive by this year. So this past weekend, the Santa Claus came and parked in the driveway and waved at the kids. And it was just, it was really sweet and it’s a really nice thing that they do because a lot of kids with special needs, it’s hard to go sit in line for a mall Santa or a Santa at a store. So that’s just something fun that we got to do. And we were really grateful that they provided that service. So

Tatum:

That’s so cool. I know I’ve seen some like social socially distanced Santas, but when kids have extra needs too I know a lot of our families are staying home maybe even more so than other families currently are, um, just to keep their kids safe.

Wendy:

Well, Amanda, why don’t we start by, um, learning a little bit more about you and your career as a nurse. Can you share some of those experiences with us?

Amanda:

So I’ve been a nurse for about 13 years, I guess, a little over than that, a little over that. And, like most nurses when I graduated, I started out at the hospital working floor nursing, bedside nursing, and then I really kind of figured out that that really wasn’t the best fit for me. And I really liked doing education and sitting down and talking with clients or patients. So I moved into public health shortly after that. So I’ve been in public health for about 11 years and I’ve worked County public health. I also did, um, maternal child home visiting. So I did that for about five years and we would go see high-risk pregnant women, first-time pregnant women. And we would work with them until their baby turned two. So that was just a great way. We formed a relationship with that mom and her baby, and the family, and we were able to provide education on parenting. And so the program, I don’t know if I said yet is called nurse family partnership and that’s just a really wonderful program. Um, the outcomes for women who are in that program are just really good. They have lower child abuse rates. They have lower risk of neonatal or infant death, maternal death is lower. So just a home visitation program that, that does really, really great things for high risk first-time moms. And then when my daughter was born, I started volunteering for the national CMV foundation and I moved into a permanent role with them as the program director about a year ago. So that’s kind of where this has all taken me and It actually kind of fits really well. don’t really believe that things are like meant to be or anything like that. I’m just not that kind of a person, but I will say it did work out, pretty well that, that my background is in educating pregnant women. And that is one of the, the biggest priorities that we have in our organization is to educate pregnant women about CMV.

Wendy:

How much did you know about CMV before your daughter was born?

Amanda:

Well, that’s, it’s a tough question. I did look back in my nursing books. It, there is a very small, short paragraph about CMV in there, nowhere near the amount that it should be considering how common it is and how many disabilities are caused every year. So, I do have to say that I did learn about it in nursing school at least, um, very briefly. And so when I heard the, the name CMV in cytomegalovirus, I remember thinking, Oh, okay, that sounds a little familiar. It’s not like I’ve never heard that before. It’s, it’s an interesting name. So it wasn’t one that I, that I forgot, I guess, but I had absolutely no idea the impact. And like I said, I do not think that the education in nursing school is proportional to the amount of disabilities caused. Um, and I think that there’s other things that are covered more intensively that are extremely less common. So I can’t say I’d never heard of it, but I definitely didn’t know that I was high-risk and I did not know the impact.

Wendy:

I asked that question because I suspected that like us as, as SLP is we don’t learn enough about it either.

Tatum:

I was going to say even being like a part of a program that was specific for hearing loss it came up and it’s a name I remember, but I’ve definitely learned a lot more about it, like on the job.

Wendy:

Well, let’s take a little step back and, and start to learn a little bit more in detail about what CMV is and how it’s transmitted from pregnant mothers to babies.I know it’s not easy to do a brief description, but

Amanda:

Yeah, I can definitely do that. So CMV is a really common virus. Most people have had this virus by the time that they’re 40. So this is not a virus that should be stigmatized or anything like that is something that is out there, kind of all over and so very, very common virus in most people, they might not even realize that they have it. If they do have some symptoms, they might be mild cold, flu like symptoms. So this is something that’s spread really frequently by toddlers. That’s kind of a hot zone for CMV. So, it’s spread through toddlers, urine and saliva that is really thought to be the primary way that pregnant women are catching this virus. So when a pregnant woman is around an older infant, a toddler, um, but really any child, they can catch CMV if they’re exposed to that, that child’s urine or saliva. And so when the, when the woman contracts that virus, she can spread it to the fetus So that virus is transmitted to the baby. Sometimes the baby is just fine. It can depend on the timing during the pregnancy. And then sometimes there are significant consequences. Um, sometimes there’s mild consequences. Sometimes there’s a stillbirth or a miscarriage. And so we don’t really know everything that we need to know about this, but that’s the basic, the basic thought as to the most common way that women are exposed when they’re pregnant and how often the babies are born with the virus

Wendy:

How often is hearing loss, and we can talk about other symptoms of CMV, but do you know, how often hearing loss is a symptom of the virus?

Amanda:

What I can tell you is that 10% of children who are born with CMV will have symptoms at birth. And that can be anywhere from hearing loss all the way to severe complications that are recognized subtle complications, that aren’t recognized of the kiddos who are born with no symptoms. We call them asymptomatic when they’re born, about 10 to 15% are going to end up with some symptom, most likely hearing loss. That’s really one of the more, one of the symptoms that can show up significantly later. And so those, those children, even if they’re born without symptoms, they need frequent hearing, hearing checks.

Wendy:

Like you, you mentioned earlier, the severity of the symptoms in the baby can depend on when, in the pregnancy, the mother contracts, the virus. So my understanding, and please correct me if I have this wrong is if it’s contracted in the first trimester, the symptoms are more likely to be severe.

Amanda:

That that is the understanding that I have as well, is that first trimester exposures, and first trimester transmission to the baby, those tend to be more severe, more significant consequences for the, for the baby.

Tatum:

What kinds of recommendations then are made to pregnant mothers or do you wish would be made if they’re not being currently made to protect themselves?

Amanda:

What we would like is for all pregnant women to be aware of CMV and to know some simple precautions that they can take. And so the CDC recommends, we recommend that pregnant women try to avoid the saliva and urine of young children and toddlers. And so we recommend this through a few different ways, not kissing children on the lips. We recommend, Hey, kiss him on the forehead or at the top of the head and give him a big hug. Um, you know, w we want moms to still be loving with their children when they’re pregnant, or with the children that they work with. But, um, you know, avoiding kissing, kissing children on the lips don’t share a toothbrush with anybody don’t share utensils with anybody, wash your hands really frequently after you’re changing a diaper, wash your hands really well after you handle toys that children have been drooling on, because the main ways that we’re thinking that this spreads to pregnant women is through the urine and saliva. So those are just some really simple precautions. The other thing is don’t put a pacifier in your mouth sometimes the pacifier drops on the ground and mom picks it up and puts it in her mouth. We don’t want that either because you’re sharing the saliva in that instance also. So those are just some really simple precautions that we want women to take. And we want them to know why, because sometimes we get the feedback. Well, those are things that people should be doing anyway. And that’s true. I understand that, but pregnant women, especially if they’re, if they’re working with young kids or if they’ve got young kids at home, they’re busy, their lives are crazy. They’re running around trying to just get everything done for the day. And it’s really easy to do those things without thinking, especially if you don’t realize that there could be a significant consequence attached. I just, I remember doing some of these things when I was pregnant and having no idea that I was jeopardizing the health and safety of my baby. And so I think when pregnant women know this, they usually do act on these things. They’re able to make these behavioral changes during pregnancy that they’re not able to make other times as well, because they want the, they want a healthy baby. They want, they want to protect their baby.

Wendy:

In terms of talking with doctors, a lot of the profession of teachers and speech, language pathologists all kinds of medical healthcare professionals is filled with young women. So how do young professionals speak with their doctors about CMV and how they can protect themselves? I guess this is a two-part question, but then how important is antibody testing prior to getting pregnant?

Amanda:

I would recommend all pregnant women or women planning a pregnancy, have a conversation with their provider and say, what can you tell me about CMV? How high risk am I, should I have antibody testing? The problem with antibody testing is that it can provide a false sense of security because some women think, well, I’ve had it before. So I don’t need to worry about it anymore. And we’re finding out that that’s not really true. Women can have a reactivation, they can be exposed to a different strain of the virus and they can catch it again. And so knowing your status, if you’ve had CMV or not before is a way to start a conversation. And it’s a way to get some information for yourself, but it does not give you a free pass, unfortunately. So we recommend the same precautions for all pregnant women, no matter their CMV status, those hygienic precautions that we went over already, those are, those are important for all pregnant women, to talk to their doctor about also just knowing that women who live with a toddler care for a young child in the home or work with young children, they may be at higher risk. And so they need to be extremely careful and take those precautions. The other thing that we run into with providers sometimes is therapists or nurses or childcare providers that they think, well, I know that that kid has congenital CMV. I’m going to avoid them. I don’t want to work with them, which it’s happened to me, to my daughter. People have said that, well, I want to get pregnant and so I don’t want to work with your daughter. She has congenital CMV and, I usually don’t say much. I I’m just like, okay, fine. But I usually try to point out that that is also a false sense of security because most of the children born with this virus are not identified, and you’re four times more likely to catch the virus from a child without a CMV diagnosis that is shedding CMV without knowing it. Then you are from a child who’s born with congenital CMV. So again, we want those hygienic precautions to apply to all pregnant women, no matter who they’re working with, in terms of children born with congenital CMV or not because children are shedding this virus all the time, in daycares, in schools, preschools

 

Tatum:

That’s a statistic I have not heard before that 4 times more likely. I’ve known professionals who haven’t wanted to work with kids with CMV while they’re pregnant. And that’s a great point, like the false sense of security.

Amanda:

The the next kid in the door is just as likely to be shedding it. Um, you know, I have no idea if my daughter is still shedding it, they can shed it off and on for years, but so can a kid who caught it at six months old. So it’s all children, not just those born with CMV. We have a handout on that, on our website. Um, I think it says like four, it might say for childcare providers or for early interventionists, I can’t remember the exact phrasing, but that statistic is on that handout.

Tatum:

Yeah. And we’ve talked before on the show. But it’s just making me think of this like trauma informed care and that process of being like denied services by a provider, I’m sure could be traumatic, especially potentially in the early stage of a child’s life when you’re still like starting your journey and getting your services set up. I’m sure that can be a very upsetting experience which you don’t have to get into if you don’t want to,

Speaker 3:

It can be. And it depends on the person. Like I said, I don’t get too upset about it, but I, I like to use it as an education point. And the other place that happens too. Well, I don’t know if it happens to lots of people this way, but it happened to us when we were in the hospital once for a seizure. So something not where my daughter was ill and she could’ve gotten people sick, and they wouldn’t let her go down to the playroom with the other kids. They said, well, she has congenital CMV. We can’t do that. And I mean, she was three or four years old by that point. And, and they said, we’ve got pregnant staff. We can’t have her leave her room. And I said, no, she can leave her room. she is no more risk to, to the people here to the children on this floor, to the staff on this floor than any other child because any other child is just as likely to be shedding it. So just another example of when that kind of thing can happen. And if you just use that as an education point, they did get back to us and say, you’re right that’s not the way that it should be, and that’s not our policy. And, and so then she was able to go down to the playroom. So I, I was happy that I, that I provided some education at that point.

Tatum:

Yeah, definitely, and I know Wendy wants to talk more about like the parent advocacy piece, but yeah,

Wendy:

I think maybe let’s talk a little bit first about diagnosis, um, that has changed dramatically since definitely since I entered the field, just the awareness, like you’re saying, and diagnosis, and we won’t get into treatment today. I think that’s a good topic for another time, because that is also new and complex. But diagnosis and that will probably lead into legislation. How currently are babies screened or how are they not screened at birth for CMV?

Amanda:

So at birth, most children are not screened for CMV in the United States. The vast majority, if they have super obvious symptoms, um, symptoms that a physician might remember as this is a classic presentation of CMV, then they might be screened, a small head size, a blueberry muffin, kind of looking rash all over their body. Um, things like that, They might be screened. The other way that they are screened is if there is legislation in place for hearing targeted screening. And so in some States, if the infant fails, the newborn hearing screening, they are required by law to have a CMV test. And that test is done usually with a saliva swab. So it’s, non-invasive, they just swab the inside of the child’s cheek. And then they send that off to the lab and get it tested. They can also test the infancy urine. So they would put a little bag inside the diaper and collect the urine, and then they can check that. The last way that they can check is blood. The problem with blood is that it’s not completely accurate, so you can have a positive blood test. The blood has CMV in it, and that’s for sure, then the kiddo was born with CMV, if it’s negative, though, that doesn’t mean that they don’t have CMV. That’s the problem. It can be a false negative. So blood is not the most accurate at this point. The other thing that’s happening is some hospitals and individual health systems are doing testing. So they might have hearing targeted testing. They might have a policy where they’re testing all NICU babies. They might have a policy where they’re using some other criteria to test infants. So that’s kind of the current state of CMV testing right now in the United States.

Wendy:

Are parents able to, um, especially when you talk about these targeted tests for babies that are referred by the hearing screening, are parents allowed to request testing for CMV? And is there a specific timeframe that has to be done in after the baby’s born?

Amanda:

Great question. Yes. I think that parents could ask for this, and I think that it will be up to the physician, whether they will grant that request if there’s not a state mandate. And it also could be up to, the parents in terms of, will it be covered by insurance if it’s not mandated and how much will it cost? You know, it could cost anywhere from, I mean, I’ve heard anything from 50 to 150 to a little bit more than that. And so it really kind of will depend on the individual situation. They get it covered, will the physician order it? This test to test for congenital CMV, you really need to do the test by 21 days of age, if you’re going to test the urine and saliva. Because after that point, it is very difficult to determine if it was a truly congenital infection where the infant got the virus before birth, or if they caught it after birth, they can catch it from other people. They can catch it from breastfeeding, other children that they’re around. And so to really establish that it was a true congenital infection. We want that test done by 21 days of age. The other thing that people do sometimes is if their baby looks truly typical at birth, and then six months down the line, they’re noticing they’re not developing appropriately, or maybe now they have hearing loss that they didn’t have before. It’s too late to do urine and saliva at that point. And so in some States, if the newborn blood spot card is still on file, they will petition to get that and have it tested. And so some people are able to get a positive result that way, like I said, it’s not completely accurate though, if that’s negative, that doesn’t mean that the baby didn’t have congenital CMV because the sensitivity or the ability of the test to pick up CMV in the blood is not perfect. And so we can miss some that way.

Wendy:

I hadn’t heard that. That’s really interesting. And, and briefly, like I said, we’re not going to get too much into treatment, but I would assume the benefits of getting tested are obviouslyaccess to treatment and understanding what, is the cause of, of the child’s complications. Besides that, are there other benefits to early testing and diagnosis?

Amanda:

Yeah, I think that there are a lot of benefits. There is, like you said, the antiviral treatment, that’s not for everybody. Um, that needs to be really discussed thoroughly with a physician who knows about that treatment. There’s also just early intervention, which we consider a form of treatment. And so just having that child get their vision tests regularly, get their hearing tests regularly tracking the child’s development to make sure that, that they are just, on track and intervening, as soon as possible, you guys obviously know how important early intervention is. And then the other thing I would say is just, it avoids what we like to call the diagnostic Odyssey. So we have parents who have noticed their child has hearing loss and that’s confirmed, but they don’t know where it came from. Maybe there’s other developmental delays or issues or seizures or something else happening with the kiddo. And they have to do all these tests to try to figure out what the true cause is. And so a lot of our families have been on this diagnostic journey and it’s taken a lot of time, energy effort, money to really figure out, Hey, this was actually the cause. And they’ve missed out on opportunity for treatment or interventions that they could have had. So I think that those are the main advantages to screening those infants.

Tatum:

Yeah, that makes sense. know you said some children are born asymptomatic, but then did you say like 10 to 15% of those kids will develop some form of symptom?

Speaker 3:

Yes. I think that the current statistic is 10% are born with symptoms, so they’re going to have symptoms. And then another 10 to 15% are going to develop a symptom. So that could be hearing loss, most likely hearing loss, but maybe something else too. And I will say, I think we just don’t know the long long-term outcomes for children born with asymptomatic CMV because we don’t screen them. So we don’t know. And if a child develops, uh, you know, an issue or, or has trouble in school or has a learning disability or something, and the child’s 8 or 10 years old, it’s too late at that point to go back and figure out that CMV was the cause. So I don’t think that we know for sure all of the outcomes for the children born with CMV, but that’s what we know right now.

Tatum:

So for those kids who are identified at birth, what professionals should follow them, like who should they be followed by? and does it change versus like if they have symptoms or if they’re asymptomatic, would you like preventively have professionals follow them, or do you follow up your pediatrician? What does the course look like?

Amanda:

Well, I definitely would defer to the child’s pediatrician and an infectious disease specialist. Um, I think that, that they should make the referrals, but I think anything from, well, hearing, hearing testing, first of all, that’s a given, that’s just kind of a flat out standard recommendation that these children should be screened for hearing loss, frequently every three months possibly more, whatever their ENT is recommending, but hearing loss from CMV can show up years later. So my daughter, for example, passed her hearing tests until she was three and a half. And she has mild loss in both ears now. So that’s something that if we said, Oh, it’s been two years, we don’t have to do that anymore. We could have missed that. So it’s important to follow up on that. Vision checks are important and then meeting with an infectious disease specialist to see what should be done, what can be done. Some kiddos will need neurology. Some children will need physical therapy, occupational therapy, for sure. Early intervention. A lot of times congenital CMV or a congenital infection is an automatic qualifier for early intervention services in the person’s state. I know it is an Iowa. I’m not a hundred percent sure about Illinois, But a lot of times it is so that those are other professionals that, that should be involved and it should be no cost to the family. And so those are just an extra set of eyes to kind of make sure that things are developing typically. Like you said, it could be a developmental pediatrician or a developmental clinic. If they’re noticing anything that is concerning, those are kind of the main ones, but again, um, I would defer to the, to the infectious disease doc and the pediatrician,

Wendy:

One of the main obviously, um, goals of your organization is awareness. Yeah. So that’s, that’s what we’re trying to help to do. It’s really important. You know, parents should be able to advocate for themselves and their kids. So Amanda, you have talked a lot about early intervention. It sounds like you have personal experience with early intervention as well. Can you tell us a little bit more about Pippa and her journey through life thus far?

Amanda:

Yeah, absolutely. So I actually usually start before I even was pregnant with Pippa because I have to point out a huge missed opportunity. Um, just that I was actually at a fertility clinic and had preconception counseling and worked to get pregnant with both of my pregnancies. And I don’t share that just to share too much information, but I really share that because this was a missed opportunity. I had a child in daycare, a toddler and I was planning a second pregnancy and no one stopped to say, Hey, you need to be a little more careful here because your son could bring home CMV. And, and of course we don’t know for sure that that’s what happened, but that definitely is a risk factor. So that was a missed opportunity. And so the pregnancy progressed along just fine and then at the 20 week ultrasound, we noticed something not typical with, with Pippa’s brain. So the brain was smaller than average in a certain area. And so they decided they wanted us to go to a specialist. So we did, they got the same measurement on the ultrasound. And I remember the doctor saying, okay, this is either a genetic abnormality. This is just a normal variation in size, or this is CMV. I remember him saying that. And so he said, we can do an amnio. So we did do an amnio. And that was if, for people who haven’t had one that was so like strangely awful, , it was so awful to sit there and, and go through that procedure. And there is a small risk the procedure, but also it was just a very emotional time anyway, and then you have to wait. And so we waited and waited to get those results back. I think it took maybe 10 days and he said CMV. And we went in and he had us go in like the back way to the clinic, you know? And you’re like, Oh gosh, I know that this is bad. If, I’m like having to like go into his special office, you know? And, um, and I remember him saying, well, you can either terminate the pregnancy or you can do nothing. And he said, just wait and see, and I’m not really a wait and see kind of person. So we did some research. We found a, world renowned CMV expert at the university of Minnesota, um, Dr. Mark Schleiss. I consider him a personal friend. I really think that he helped our daughter so much because he was able to arrange for us to get some experimental treatment during the pregnancy. So we did that. It’s called cytogam. It was an infusion. I got four infusions during the pregnancy. And, um, just side note, this treatment is still unproven and it’s extremely expensive. Each treatment was $20,000, but our insurance covered it because they know, I think insurance companies know how expensive a symptomatic child with congenital CMV can be. And so we got those treatments covered and then Pippa was born early, not because of CMV actually. She had a true knot in her umbilical cord and she stopped moving. And so she was delivered at 34 weeks at the university of Minnesota. And she spent a couple of weeks in the NICU, again, not really because of the CMV just because she was early and she had to learn to eat and grow and all those things. So we went home and she did six months of antiviral treatment. And, you know, she looked really good at birth. And if someone hadn’t noticed that slight variation on that ultrasound at 20 weeks, I think she would have been a child who was missed because she looked perfect. She didn’t have a rash, she didn’t have a small head size, you know, she did pass the newborn hearing screening. So she’s an example of a child who, who may be looked typical, but really had a lot going on. So Pippa developed pretty typically until about six months. And then we really started noticing that she wasn’t keeping up with the milestones. So we had early intervention in the house the whole time. That was great, they were lifesavers for us because, we had had a typical child before. And so I, I didn’t know how to like push the next development. And it was so weird to like, have to like push it and to not just let that development happen. So they were great that it was so nice to have them come into the house. Also, when you’re on the antiviral, you are at a little bit higher risk for infection. And so it was great to not have to take her out and to have people come in and see us. And so she did really well. She’s five years old now. She developed hearing loss at about three and a half. She walked at about two and a half. She started developing seizures at about one. So she has seizures every few months. Um, they’re pretty well controlled, but she is non-verbal and she does have quite a significant amount of trouble with eating. So she does have a feeding tube, although she eats mostly orally, we use the feeding tube for meds and as needed if she’s sick or something and not eating well enough. And then another thing that another one of her big diagnosis, I guess, would be it’s called polymicrogyria. So that’s where the brain did not form typically. And so this is a really common thing. I don’t know the percentage. I don’t know if we know the percentage of children born with CMV that have polymicrogyria, we call it PMG. But we do know that CMV is the most common cause of PMG. So this is just this brain malformation where instead of the brain having these nice folds like a typical brain, the brain is more smooth than certain areas. So that’s kind of one of her big, causes of the delays that she has. And so she does have an intellectual disability. And so work with her, she goes to a lot of therapies. She still gets her hearing checked and her vision checked. And she goes to early preschool. She’s got a special education teacher that works with her and she’s doing really well. And I think what we really focus on is is she happy? Every single decision is, will this make her happy or not? We’re always, we’re always wondering. And so we really keep that in mind and she’s super happy. And so that’s just really the thing that, that we’re so grateful for.

Wendy:

She sounds amazing.

Amanda:

She’s pretty cool. She’s pretty cool.

Wendy:

Well, she’s got some cool parents. It also appears, so she’s incredible. So, um, how does she communicate with you? You said she’s nonverbal. What kind of communication do you guys use?

Amanda:

So there’s a couple of things. It’s really hard. She doesn’t have enough dexterity and I think some of the intellectual disability plays into this a little bit, to do a ton of signing. She does have a few signs and if she really wants something, she will come up with a sign for it. And it might not be the right sign, but we don’t care because we know what it means. So, um, so she has maybe five signs I would say. And then she’s working on using a communication device. So it’s like a Tobii Dynavox. And it’s got, um, you know, buttons and she can press, and then it talks for her. We just call it her talker. So she’s working on learning how to use that too. And it’s pretty amazing. I mean, just like all kids, you know, an electronic device, they figure it out. And so she’s working on that, um, quite a bit, but we also just know her so well. Um, we, we try and keep her on somewhat of a schedule and a routine so  she knows what’s coming up next.

Tatum:

Yeah, that’s great. I like that kind of like guide that you have, like will this make her happy to guide your decisions? That’s awesome

Wendy:

Well, thank you so much for sharing, your story and Pippa story. Like we said, she sounds amazing. And it sounds like early intervention was a good experience. I’ve never heard someone describe early intervention like that pushing the next developmental skill. I think that is just so perfect for what early intervention kind of does and how you related it to like, well, instead of just letting things happen, you work towards the next skill, which that just kind of sums up early intervention. I think that’s a really great way to talk about it.

Amanda:

Yeah. They were, they were amazing. Like I said, having a typical child first, I mean, you do all sorts of things to encourage their development but you don’t like really minutely think about, okay, now here’s the next baby step I can take to move forward. So they were great.

Tatum:

Yeah, that is. I thought that that was an interesting phrase too. Not that all families are the same, but it makes me think of what our families might be thinking and gives me insight into like how they kind of view what we’re working on. Our like goal is to keep things like natural, like in the natural environment and add to your routines, but it is even even doing that. It’s still just by virtue of being there, it’s changing the situation. I know we want to talk, I mean, you’ve mentioned throughout our conversation today, a lot of, advocacy that you’ve done for Pippa. And I know your role at the national CMV foundation is also geared towards that. And I know Wendy really wanted to get into kind of like the progress that’s being made in legislation for like that initial screening and, and informing and educating families.

Wendy:

I think how I started to learn about parent led advocacy and legislation around CMV was what happened in Illinois in 2016. Um, and we are lucky enough to be in a state with, you said the term perfectly Amanda I’m hearing lead screening, or tell me how you say that “hearing targeted screening.” So yeah. So if a baby is referred through the, um, EHDI screening, then they automatically get screened for CMV in Illinois. So,

Amanda:

So the difference in, in Illinois, it is an opt in just to clarify. It has to be offered. Got it. Oh, it has to be offered. Okay. That makes sense.

Amanda:

So one of our community Alliance chairs, one of our volunteers is Erica Steadman and she was one of the big parent advocates for Illinois. So, her and I do lots of work together and, she has told me that that is an opt-in.

Wendy:

I just thought it was so incredible. Um, I just remember being in the field at the time and like seeing news stories about these, you know, parents going down to Springfield and telling their stories and from what I can understand is what made the change. And that is just really inspiring to me. So can you talk a little bit more about, how some of that works in the country and what steps need to be taken for more legislation?

Amanda:

Sure. Yeah. So the main way that CMV laws have been passed in the United States is with parents, parents start their child gets a CMV diagnosis. They’re fired up, they think to themselves, why didn’t anyone tell me about this and why aren’t we screening for this so that these, these children can get started on early intervention and other services. So parents do a really, really great job of sharing their story. That’s one of the main ways that this is getting done, they share their story. They, go down to the Capitol, they talk with legislators, they find legislators who connect with them and then they get it going. And so I think that that’s the first step is really to start sharing your story and start talking to legislators in your state. And so we do a lot of, um, I wouldn’t call it consulting, but, but if people come to us and say, we want to do this in our state, how did it get done in other States we can serve. We certainly provide advice on that. But engaging your representative or Senator state representative, or Senator and telling your story and sharing photos and going down to the Capitol when you can those are great ways to get started. You can show them the language of the laws that have been passed in other States, that’s sometimes really helpful because that makes their job a little bit easier. They don’t have to create it from scratch. And then just being really like really direct. This is what I want you to do. I want you to sponsor a bill, a CMV bill. I want you to vote for this CMV bill. I want you to meet with me and talk about CMV. And so the families that have done this have just put in a lot of work and a lot of effort, and it’s worked out really well in a lot of States.

Wendy:

Yeah. That’s, that’s wonderful. That’s a great explanation. I know some professionals want to get involved as well. How do we support families that are either pushing for this targeted legislation or just help with awareness and advocacy? What can professionals do?

Amanda:

Well, if there’s not legislation in your state, I think that that a professional can get the ball rolling, you know, finding a family that you can connect with and teaming up to start emailing senators and representatives and start providing education. And I think that professionals are instrumental because the senators and representatives, they will connect with the families and they will believe the families, but they do want that backup. And so we’ve had professionals go to the Capitol and talk to legislators. We’ve had professionals write letters of support, um, Pennsylvania, just, they almost passed their CMV legislation. It didn’t quite go through, but they had a letter with 25 professionals who had signed it, doctors, therapists, um, ENT all sorts of different disciplines. That’s another thing calling the representatives and the senator. But then also just, yeah, like you said, spreading awareness, talking to other colleagues about the importance of CMV. Sometimes the professionals are not really completely aware of how common it is. Even in the hearing loss world, you know a quarter of childhood hearing loss is caused by CMV. So that’s, that’s a huge, that’s a huge thing. And so I, when I worked as a nurse and we were working with newborns, I would say to all my fellow nurses, if you have a child that failed, that newborn hearing screening, you should be thinking to yourself, CMV, is CMV the cause? Could that be it because there’s a 25% chance that it was the cause. And so just kind of talking within your network, other therapists, other professionals, other doctors, just making sure that everybody’s got this on their radar, because I think a lot of times it’s like we talked about earlier, it’s something that was covered in school, and then you don’t realize that you’ve seen it since then. I’ve had doctors say to me, I’ve never seen a baby with congenital CMV. And I’m like, yes, you have. You just didn’t know because they didn’t have symptoms. It wasn’t obvious at birth and the disability or the delay or the hearing loss or whatever it is was never tied back to CMV. And so I think just having those conversations with, with other professionals in your network is, is very important.

Tatum:

Yeah. That makes sense. Um, we don’t have to get too, too into it, but could you talk a tiny bit about like the differences between legislation in different States? Like you mentioned, Illinois is an opt-in state. Like what are, what are some variations and what are the benefits of certain ones?

Speaker 5:

Sure. So currently we have four States that require screening of newborns who failed the hearing screening and education for pregnant women. So those States are Illinois, Iowa, New York and Utah. And so those States have required that there’s educational materials made and that if the newborn fails, the hearing screening that they’re at least offered a CMV test like in Illinois, or there could be a mandatory CMV test unless the parents opt out like in Iowa. And so those are the States that have both, they have education and they have screening, some States just require education. So the department of health in that state had to put up information about CMV on the website and create some educational materials. And so there’s nine States that do that

Wendy:

So, okay. The information is up on the department of public health website, but is there oversight?

Amanda:

Unfortunately, most of these laws have been passed as unfunded mandates, so they required these things, but there’s no funding to follow, keep track, keep up with it, ensure that it’s happening. And so actually the only States that had funding were Utah and Idaho. I’m not sure about Utah, but I think Idaho’s funding had to get repurposed for COVID. So even the States that have some funding for this, it’s always a risk of that going away. And so the other States who require these things, but don’t have funding, there’s no real way to track and make sure it’s happening. You kind of have to trust that that professionals are aware of the law and following the law. And so that can be difficult because they can always say, “I didn’t know about that.” And so how do you get that information out to them? It’s, it’s a constant struggle. And so that’s where the professionals are really important too. And so if there is a CMV champion in your discipline that’s important because they can get that information out there and say, Hey, did you know, we have a law we’re actually supposed to be doing XYZ in our state. Um, and, and are we doing that?

Wendy:

Yeah, I think that’s a good reminder too. Um, that just because you have legislation in your state to still continue advocacy and education and not just think like, Oh, we’re good, we’re good. We got this mandate passed in 2016. So we’re okay.

Amanda:

Yeah. It feels really good when you get your law passed and it feels, you feel a little vindicated. You feel like, yes, I knew this was a big deal. I knew that this isn’t the way it should be. You feel like that, but then you realize that it’s not really over yet because until things change and people are aware we still have work to do.

Tatum:

Yeah. That’s kind of what I was thinking by asking that question of the differences. Cause even in Illinois, it sounds like there could be improvements to our laws to make sure it’s not missing as many kids as it probably is. I would guess based on just the wording of the law,

Amanda:

Really the goal for us as a national foundation is we want CMV to be on the recommended uniform screening panel. That’s what we would like. We are always tremendously happy when state by state legislation happens. That’s amazing. And that’s the way it’s getting done currently. But eventually we would like this to be recommended as a uniform universal screening panel for all infants. And so we are submitting an application for that we have, and we are resubmitting again. And if that were to go through, then it would be recommended to all States by a national committee and they would recommend that all States add it. And then the States still have to choose individually, are we going to add this? But that’s really the goal is we want all babies to be screened, not just the ones who are born with hearing loss, because a lot of children born with congenital CMV who are going to have hearing loss, pass the newborn hearing screening. We’re not catching them all with hearing targeted screening. So that would be the goal.

Wendy:

Well, hopefully we are. We continue to, hopefully we see that change happen. Yeah. It sounds like we’re on the right track. And thankfully there, there are people like you that can work to really make this happen. So, thank you for all that you do.

Amanda:

Oh, well, thank you.

Tatum:

We’ve talked a lot about advocating for new legislation. Um, but we know at the beginning we mentioned one of your goals as the elimination of CMV in general. What kind of advocacy and progress has there been around getting a vaccine for CMV?

Amanda:

So I’m by no means the CMV vaccine expert, but, we do have several companies working on a CMV vaccine, some of the same companies who are manufacturing the COVID vaccine actually, and some are moving into later phase trials, which is great. There has been a lot of work on CMV vaccines, but it’s been going on for decades and we do not have a licensed vaccine available. And so this is really one of the most cost effective vaccines in development, pre COVID I would say obviously but we’re talking about, you know, eliminating or drastically reducing, the number of disabilities caused by CMV every year: 4-6 thousand disabilities each year. And so this is really the way that that CMV will hopefully ultimately be solved just like congenital rubella used to be a major cause of disability in infants and children also. And, and now we don’t hear about that happening very often anymore. And pregnant women are tested to make sure that they have antibodies to rubella. So vaccine is, is really the way that we solve this. And I think that it would be great if we had more funding for vaccine research so that the process could hopefully, um, be sped up because it is painstakingly slow. And it’s very hard to sit back and watch. Um, and the COVID vaccine obviously has been of utmost importance and that has unfortunately caused some stalls in the progress towards a CMV vaccine. And so we would really like to see that work continue, and we’d like to see more funding for it.

Tatum:

Because of the COVID vaccines. I feel like I know more about the development of vaccines and I had not realized, you know, a huge thing that like slows down the development is the funding. Like these COVID vaccines that are coming out have gone through the same safety trials that other vaccines have gone through, but they’ve been able to do it in a year because the funding has been there. So it sounds like there might be like an advocacy opportunity to advocate for funding for a CMV vaccine.

Amanda:

It’s amazing how quickly things can move and get funded when there’s a public outcry for that funding. And so we saw that. I mean, we see that with the COVID vaccine, which obviously is, is tremendously important. And I, I do not in any way mean to say that that, that shouldn’t be happening because it should, um, COVID is, is obviously hugely serious. We also have seen this happen, like with the Zika, we had the Zika virus a few years ago and, and that was a major media. And the amount of funding that went to Zika was tremendous, especially considering how few disabilities have been caused by Zika in the United States. And each of those that has been caused, I think it’s somewhere less than 300, disabilities from Zika virus. Those are all tremendously serious. And again, I do not mean to downplay anything else by saying that CMV is important, but we’re talking about 4 to 6,000 disabilities per year caused by congenital CMV. So we really want to see the amount of funding be proportional to the amount of disability caused or illness caused or death caused. Um, you know, we’re talking about 400 infant deaths every year, so we really want to see more funding for congenital CMV for research, for vaccines, for everything.

Wendy:

I was just going to say, maybe this is one of those silver linings of COVID, right? I think the general population knows way more about vaccine development than we did. And maybe there’s more interest in, when your child is diagnosed with something or you get something you think to yourself, is there a vaccine for this and how does that happen? And so maybe after this COVID vaccine is readily available to everyone, focus can go back on some of these other, really important, things that are being done.

Tatum:

Yeah. It is interesting though. Cause like I had no idea, like I was saying that the holdup is, I thought it was like the science, I mean, I know sometimes probably it is science trying to catch up, but it’s like the science is there and we just need the funding. So the last thing we like to ask guests is just for any general advice you can share with our listeners, our listeners are mainly parents or families and professionals. And then if you have any resources you’d like us to list or include in the show.

Amanda:

The first thing families say to me when they get a congenital CMV diagnosis. And I think it’s the first thing that families say to any provider that gives them that diagnosis, congenital CMV. The first thing they say is why didn’t anyone tell me about this? That is what they all say. And I remember saying that to the doctor when, when we got our diagnosis, when I was still pregnant. And so I think it’s so important for people to know about this and to not hear about this for the first time, when there’s an abnormality during an ultrasound or when their child isn’t developing typically at six months old. I just do not think that it’s fair. That that’s the first time that people are hearing about this. And so my biggest messages to talk to the pregnant women in your life to the women planning pregnancies, talk to the dads, talk to all the young people who are childbearing age and making sure that they know about this because not knowing about this is just it’s to me, it’s unacceptable. And I think that people have the right to know about something that’s so important that could really significantly impact their pregnancies and it can change their whole life. I mean, my life is completely different than it would have been if possibly if I had known about this. And so that’s always, my take home message is just spread the word, find a few pregnant women or young women that you know, and tell them about this so that they will not ever be in the position where they’re saying that to a doctor. Why didn’t you tell me if someone had just told me I would have tried to try to prevent this from happening. And so that’s always where I leave. It is just spread the word, not the virus. That’s what we usually say.

Tatum:

Great. Um, and then do you have any resources to share now? Maybe the website or your podcasts. I know we mentioned at the start,

Amanda:

There’s the website, there’s the podcast. Um, our Facebook page has great information. We try and post when there’s new information out there. Um, new research studies, things like that, the CDC website is good. They’ve added a lot of materials, about CMV in the past couple of years, which we’re extremely grateful for. So that’s really the other place that we send people. Those are the two, our website and then the CDC website.

Tatum:

Well, thank you for joining us. Um, I know I’ve, I learned a lot, honestly. Um, like you mentioned in the beginning, uh, or like we’ve mentioned on the show already that this is not even addressed that much, even in like a hearing loss focused speech pathology program. Um, so it’s definitely something I’ve learned more about on the job, and this has been really helpful for me. And I think probably our listeners as well.

Wendy:

Yeah. Agreed. Thank you so much, Amanda. This has been such a great educational experience for us and hopefully for, for all of our listeners and then their friends and family. So thank you for, for sharing with us.

Amanda:

Thanks for having me. We’re always so happy to get the word out. And so we appreciate you guys picking up this important topic.

Tatum:

Thank you everyone for joining us for another episode of all ears at Child’s Voice, be sure to join us for our next episodes. We release episodes once monthly. You can also email us at podcast at https://childsvoice3.wpengine.com and you can find episode show notes and episode transcripts at Child’s Voice’s website childsvoice.org/podcast.

Wendy:

And if you’re interested in learning more about Child’s Voice, we’re on Facebook, as well as Twitter and Instagram with the handle at @childs_voice Thank you for listening.

Tatum:

Yeah. Thanks for listening.

Kids:

Bye. Thanks for listening.

 

Dr. Michele:

Thanks for listening. Be sure to subscribe to the show wherever you listen so you don’t miss any episodes. As always we appreciate your feedback so please send us an email or voice memo at podcast@childsvoice.org If you are interested in supporting Child’s Voice and programs like this one, please visit us at childsvoice.org.