Kathleen and Dr. Schleiss answer questions about congenital cytomegalovirus (cCMV)
2/12/2025 7:40:45 AM
[Video opens with the logo for the Commission sliding into view. Video transitions to a title slide with text: “Interview with Kathleen Smith and Dr. Mark Schleiss, All about cCMV”]
[Video transitions to three people sitting in a row in front of a dark background. From left to right: Kathleen Smith, Dr. Mark Schleiss, and interpreter Regina Daniels. Kathleen signs, Mark speaks, and the interpreter signs for Mark.]
>> Mark: My name is Dr. Mark Schleiss and I am a professor of pediatrics at the University of Minnesota Medical School. I’ve been studying cytomegalovirus for about 35 years. I am a pediatrician by training and specialize in pediatric infectious diseases, but I’ve always had a particular interest in CMV, particularly CMV infections in newborn infants and the long-term consequences that can happen because of those infections. So that’s my main area of research and advocacy and academic expertise.
>> Kathleen: Hello, I’m Kathleen Smith. I’m with the National CMV Foundation as the Community Alliance chair for Minnesota.
[Image of Kathleen as a child, sitting with her sister in front of a Christmas tree. Title: “Kathleen as a baby with her older sister. Photo provided by the Smith family”.]
[Video transitions to a view of Kathleen signing.]
>> Kathleen: We suspect I was born with cCMV. At five hours old, I looked like I had measles with a rash all over my body. My dad also noticed that my right eye looked a bit different. A bit of investigation showed that I had coloboma, which can be caused by CMV. At the age of 4 months, they noticed I wasn’t responding to sounds. They brought me to an audiologist who did some testing. The first audiologist thought I could hear from my responses. That turned out to be incorrect. My mom decided to look for another audiologist. The audiologist tested me. My mom hoped to get audiogram results that she could bring back to the school program in Edina, but that audiologist did not believe in early intervention for deaf children. This was really upsetting to my mom, who didn’t want any negative impacts from my hearing loss. So, she brought me to another audiologist at the University of Minnesota who finally detected that I was deaf. That was July 1981. I was born in 1980 so it took them a full year to diagnose my hearing loss.
[Video transitions to Mark speaking with the interpreter signing.]
>> Mark: So CMV is an abbreviation for cytomegalovirus. And that’s a big, big term. All it really means is a large virus that makes cells, swells up, and looks bigger under the microscope. What that really stems from is observations over 100 years ago by pathologists who looked at tissues under the microscope and saw that there are these cells that were too big, they were really large so cytomegaly means big cell. This was before viruses had even been discovered. Viruses weren’t really discovered until the 1940s. The overall scheme of things not that long ago. But we knew about this disease because there was something that was making the cells look large under the microscope in sick babies. So as time went by, we discovered that the virus was responsible. CMV is an infection that most people around the world get at some point in their life. By the time you’re in the seventh or eighth decade of life, three quarters of all people in the US and Europe have had CMV. In the developing world, it’s actually a lot higher than that. 100% of people get CMV in low and middle income countries. The challenge and the dilemma is the pregnant person who gets the first CMV infection in their lifetime while they’re pregnant. If that happens, and there’s no immunity to the virus, the virus can infect the developing fetus, causing congenital CMV. So that’s what we mean when we say congenital CMV. It’s an infection that you acquire before you’re even born and that in turn can damage the developing fetus and lead to hearing loss and other disabilities as well. So that’s the virus, that's why we call it CMV, and it’s really the congenital CMV that’s the main problem when we talk about deafness, developmental disabilities, and other kinds of long-term consequences for the young child.
[Video transitions to a view of Kathleen signing.]
>> Kathleen: OK these are two different things, CMV and cCMV. CMV is just the name of the infection. cCMV occurs during pregnancy, which can cause hearing loss. This is only during pregnancy.
[Video transitions to Mark speaking with the interpreter signing.]
>> Mark: So, Minnesota in 2021 passed legislation called the Vivian Act. And I’ve always kind of taken a deep personal interest in that because Vivian was my patient. Her mother and I actually started talking about this in 2015/2016. It only took us six years, which in the world of the legislature and in the world of politics is actually a very short time. We had a lot of obstacles along the way including the COVID pandemic. But I really have to give credit to parents. It was Vivian’s mom, mothers and fathers, lots of families of children in Minnesota who were born with CMV that went to testify at legislative hearings, put on fundraisers, informational sessions. And after some tenacity and persistence, we got that bill passed. So, Minnesota became the first state to test all newborn babies for CMV infection. The bill also importantly provided funding and the funding is now at the State Health Department. It’s used to monitor and track babies with CMV, to look at their developmental outcomes, most importantly of all, monitor their hearing. And ask questions about speech and language in babies that have CMV. The most important point about CMV and hearing loss is that, perhaps as many as half of all babies who are destined to have hearing loss in early childhood actually pass their newborn hearing screen. Seem to be able to hear normally at birth. But they go on at three, six, nine, twelve, fifteen months of age to develop hearing loss later. And I think Kathleen’s story is kind of a testament to this; that if a young child loses their hearing, sometimes it’s just not noticed. Parents may not pick up on it, doctors don’t pick up on it. And so, by testing for CMV, and identifying it at birth, we then identify a group of babies that need to be monitored very, very closely for delayed onset hearing loss. And if you can pick up that hearing loss, then you could offer intervention that can make a big difference for the babies’ speech and language development. So that’s really what Minnesota has tailored the CMV screening to focus on most of all, is identifying a group of babies that would benefit from very, very close monitoring and early intervention.
[Video transitions to Kathleen signing.]
>> Kathleen: I’m a volunteer with the National CMV Foundation. My job is to provide education and resources to parents who are not sure what to do or where to go for help. For example, if they are not sure what to do with their deaf child, I can direct them to Minnesota Hands & Voices as a resource. I also encourage OT & PT as later in life there could be balance issues. I personally struggle with balance because back in the 1980s, they didn’t have the resources and knowledge connected with OT and PT. At the same time, I work to educate health care providers because 91% of women and providers do not know about cCMV. There are about 9% who are aware and that is a huge difference between the two. My job is to provide education and how to reduce the risk of CMV because it is on the rise. We want to reduce the risk as much as possible until a vaccine becomes available.
[Video transitions to Mark speaking with the interpreter singing.]
>> Mark: I think the years ahead are going to be challenging times for health care. Incorporating scientific knowledge into medical decision making. And decision making about public policy. And I think it's really important for all of us in medicine, in the community, certainly in our political bodies to embrace the idea that science matters. That scientific information can make lives better and benefit children. That’s what I care about the most because I’m a pediatrician. And families. Part of what we can do in CMV is advocate for the incorporation of the knowledge we gain from things like newborn screening. My most important answer I think would be to embrace the knowledge that we gain and in turn translate that into patient care and development of new strategies. To try to decrease the burden that CMV has on children. And I would just like to add that when I say burden, I’m really talking about a financial cost, the cost of providing complete audiology care, neurology care, care for developmental disabilities, care for special needs. I’m just saying that if we were able to prevent those things through knowledge awareness, prevention, and eventually vaccination, the cost savings would be tremendous. Even more important than the cost savings through, the benefit that it would provide to families. Families often go on a search. Some call it a diagnostic odyssey. A search to try to understand why, try to understand the cause, try to understand the reason. And with CMV testing, now we have, at least we have an answer. But the impact on families is still very large. The emotional stress, feelings of guilt that sometimes families feel because this has happened to them. So, I think the other big benefit, even bigger than the financial benefit, would be the benefit on people, kind of benefit on families to try to develop strategies to prevent this infection from ever happening in the first place.
[New slide: “Babies with signs of congenital CMV at birth are at greater risk of long-term health concerns, such as: Seizures Visual impairment Developmental and motor delay Lack of coordination or muscle weakness - Minnesota Dept of Health website”]
[video transitions to Kathleen signing.]
>> Kathleen: We are having a conference coming up in September 2025. You will have the opportunity to learn more about CMV and how you can help with this work. Both Mark and I will be there. We are looking forward to it.
[New slide: “2025 CMV Conference Minneapolis, MN“.]
[Video transitions to Mark speaking with the interpreter signing.]
>> Mark: I think the best resource always is discussion with your primary care physician. I think if you are a pregnant person or parent of a young child, having discussions about these issues with your doctors is always a good place to begin. That’s particularly important for a young woman who might be planning a pregnancy or in the early stages of her pregnancy who wants to understand her risk to this, who wants knowledge about CMV. Pregnant women in the US today are well-informed about a lot of things. I think I have yet to meet the pregnant patient who hasn’t been concerned about cat litter. About the importance of not changing the cat litter when they’re pregnant. And that’s important because the cat litter can transmit an infection called toxoplasmosis, which can also damage a developing fetus. But in the overall scheme of things, toxoplasmosis is really rare. Extraordinarily unusual. CMV, on the other hand, is one of the most common infectious diseases in the United States and possibly the world that causes disability in children. So, I think we need to do a much better job. We, as physicians, we need to do a much better job about educating our patients, particularly our pregnant patients about CMV. So, I think if people want to explore this and get information about it, talk to your doctor. The young infant, the newborn baby, who presents to the pediatrician for well-child care, who may have a question about that baby’s neurologic development or that baby’s hearing or that baby’s growth. Talk to your pediatrician.
[New slide: screenshot of National CMV Foundation website.]
>> Mark: Now, I think to go deeper, I highly recommend the National CMV Foundation. Kathleen is the community alliance representative for the National CMV Foundation here in Minnesota. And it’s a terrific organization that has tremendous resources on their web page. Very receptive staff who can be approached by email with questions that arise. And so, I think that’s a really good source of information as well.
[New slide: screenshot of UMN CMV website.]
[Video returns to Mark speaking.]
>> Mark: My laboratory at the University of Minnesota also maintains a website where we try to provide some information about CMV. In all honesty, it's not as good as the National CMV Foundation’s website but I field a lot of questions from families, really all over the country and I’m always happy to try to answer emails or try to steer people in the direction of getting more information about resources, if they have any big questions.
[New slide: “CMV Resources”. Additional text below:
University of Minnesota: Pediatric Infectious Diseases CMV,
CMV Family Support (private Facebook group),
Minnesota Department of Health”]
[Video returns to all three standing in a row.]
>> Mark: I would like to just thank Kathleen for sharing her personal story about CMV. That’s not always easy to do and so I think it really deserves a gratitude on the part of the community and all of us in CMV research. So, thank you for that. I think that it’s really important as we look to the future, increase knowledge and awareness broadly across the community. CMV as we’ve talked about is the most common infectious disease in the US and probably the world. It causes disability in children and yet when we talk to pregnant people and women of childbearing age, the knowledge about CMV ranks dead last. We are not doing a good job, we the medical community, the public health community. We’re not doing a good job about educating people about how to prevent this infection. So, my biggest take-home message would be that we need to develop strategies to increase knowledge and awareness of this and we need to look to a, I think, a very bright future where we can look at behavioral interventions that can prevent CMV acquisition during pregnancy and hopefully a vaccine in the next few years that could be given to people prior to pregnancy.
>> Kathleen: Thanks Mark. I want to share a little bit. I’m very excited to share that I am writing a book about my journey through CMV. I will also be going to the EHDI Conference in Pittsburgh to get more information out there in regard to CMV. I think you pretty much said everything.
[New slide: “The Minnesota Commission of the Deaf, DeafBlind & Hard of Hearing was a supporter of the Vivian Act legislation in 2021, which directed an advisory committee to review congenital CMV for possible inclusion on Minnesota’s newborn screening panel. In 2022, the Minnesota Commissioner of Health approved the recommendation to add congenital CMV to the newborn screening panel, following the advisory committee’s recommendations. Minnesota is the first state in the country to screen all newborns for congenital CMV.]”
Featuring Kathleen Smith and Dr. Mark Schleiss. The Minnesota Commission of the Deaf, DeafBlind & Hard of Hearing thanks:
Regina Daniels for ASL interpretation.
Jennifer Williams for voiceover.
Riss Leitzke Photography for filming.
Dee Ramnarine for interpreting.
Keystone Interpreting Solutions for editing.
MDH for their feedback.
[Video ends.]
health care
legislation
education
language acquisition
