Latest news with #NationalCMVFoundation
Yahoo
4 days ago
- Health
- Yahoo
Generation ROC: 1st grader's hearing loss inspires mother's advocacy
ROCHESTER, N.Y. (WROC) — Like any other kid who wakes up in the morning, Lyla Russell gets dressed, eats her breakfast and brushes her teeth. One extra step for this special first grader—she puts on the processor for her cochlear implant. 'It feels great with my processor,' Lyla explains when asked how it feels to hear through both ears again. Lyla has congenital cytomegalovirus—or cCMV—a virus that passes from mother to child during pregnancy and can damage the developing auditory system. Her parents say they were initially confused by the diagnosis. 'My first reaction to that was — I had a lot of various emotions. I had never heard of congenital CMV, I had absolutely no idea what it was,' says mom Kara Russell. 'As a mother of three children never hearing about that I was sad, I was angry, I was concerned.' CMV infections are the leading cause of non-hereditary hearing loss at birth, according to resources by the National Institutes of Health, accounting for roughly 10 percent of cases. While the infection only affects Lyla in her left ear for now, her hearing could eventually fade in her right ear too. She's worked hard through all her mental fatigue and confusion to share her bright smile with the world. 'It's a lot of work. Her brain has to work very hard to get that hearing pieced together from her processor side, but since [getting the implant] it's been like night and day. She'd been going through a lot—some behavioral issues, some academic issues, she was receiving speech services,' explains Kara. 'We really didn't know what the root cause of it was, but then when we got the confirmation of her diagnosis and hearing loss, now with the cochlear implant it's been a huge improvement,' she continues. 'This is hard work for me. … To do everything with my processor,' Lyla adds. To better understand cCmv, Kara reached out to the National CMV Foundation. Her passionate search for information and ways to help other families lead to her being appointed as co-chair for the foundation's New York alliance program. 'Raising awareness, talking with other parents who have recently had the diagnosis of congenital CMV, speaking to legislators,' Kara explains of her role. 'I know how scary that can be. I know how desperate I was to find somebody that had heard of it and who had also gone through that experience as well.' 'I really didn't want to ever hear another mom say, how come nobody told me,' she continues. For National CMV Awareness Month in June, the foundation is highlighting two bills for New York to consider: one to ensure pregnant patients are given information about CMV and the other to ensure all newborns are screened for the infection. Lyla's perseverance inspires her family every day to push forward so every kid like her gets the help they need and to see themselves out in the world. One way her two siblings have rallied behind Lyla is drawing cochlear implants on their toys to make sure she never feels left out. 'She started noticing dolls. She said how come my American girl doll doesn't have a cochlear implant? How come I can't find a Barbie that has a cochlear implant? I said these are really great questions,' Kara explains. She says she hopes in the future, kids like Lyla can see clearly every day that they're not alone. 'Yeah, I'd like it a lot. If a kid with a processor was, like, in a magazine,' Lyla says. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Yahoo
6 days ago
- General
- Yahoo
Virus That Can Cause Hearing Loss in Babies Is Widely Unknown
ASHA Uses June Awareness Month to Urge Increased Public Education ROCKVILLE, Md., June 3, 2025 /PRNewswire-PRWeb/ -- A common virus that is largely unknown and generally harmless in healthy individuals is also a leading cause of hearing loss in babies due to exposure in the womb. Yet most women are not warned about this infection—called cytomegalovirus (CMV). A worrisome 91% of women have never heard of CMV, according to the National CMV Foundation. To improve this picture, the American Speech-Language-Hearing Association (ASHA) is sharing information and resources throughout the month of June, which is National CMV Awareness Month. "It's incredibly unfortunate that most pregnant women have never heard of CMV," said Bernadette Mayfield-Clarke, PhD, CCC-SLP, ASHA 2025 President. "This lack of public attention can rob women of the opportunity to take preventative measures that could protect their babies from numerous long-term conditions associated with this virus—including hearing loss and developmental delays." CMV can infect people of all ages. In the United States, nearly 1 in 3 children is already infected with CMV by age 5. More than half of adults will contract the virus by age 40. Most people who have it show no signs or symptoms and thus aren't aware that they have been infected. When healthy people do show symptoms, these are usually mild and include sore throat, fatigue, or fever. Congenital CMV is the term for children who are born with the virus. About 1 in 200 babies have congenital CMV. Of those babies, about 20% will experience long-term health problems. Most babies with congenital CMV do not show symptoms at birth. Congenital CMV is associated with long-term disabilities that are often delayed in onset. CMV and Hearing Loss Hearing loss is common in newborns with congenital CMV. Some babies will have hearing loss at birth, whereas others may develop it later. Because some of them will still pass their newborn hearing screening, it is important that all families are aware of the warning signs of hearing loss (ASHA provides a list of these signs in babies and toddlers). If a baby displays any of the signs, they should see a pediatric audiologist for a full hearing evaluation. Hearing loss in babies with congenital CMV may progress rapidly during childhood into adolescence. Consistent access to sound during childhood is critical for speech and language development, communication, and learning. Undetected and untreated hearing loss during childhood can restrict a baby's exposure to spoken language, which can have lifelong consequences. Except for Connecticut and Minnesota, most U.S. states do not screen all newborns for CMV. However, some states will test babies who don't pass their newborn hearing screening or have other risk factors or symptoms. If CMV is identified within an infant's first month of life, the baby can be treated with antivirals—medicines that may decrease the severity of hearing loss. Nevertheless, babies will still need to be closely monitored. All children with congenital CMV should have regular hearing checks. Early intervention services are tremendously impactful for children who have hearing loss and/or other diagnoses. Often, these children will benefit from multidisciplinary teams that include audiologists, speech-language pathologists, occupational therapists, and others. Preventing CMV Pregnant women can lower their chances of contracting CMV by reducing contact with saliva (spit) and urine from babies and young children. The National CMV Foundation encourages these practices: Wash your hands often with soap and water for 15–20 seconds—especially after changing diapers, feeding a young child, wiping a young child's nose or saliva, and handling children's toys. Being aware of your risk level is also key. Due to the high rate of infection in children under age 5 years, pregnant women who work with young children (e.g., pediatricians, preschool teachers/aides, speech-language pathologists) or those who already have a toddler(s) at home are at heightened risk. It is critical that pregnant women who interact with young children are diligent in the preventative practices above to reduce the risk of CMV. For more information about CMV visit, For more information about hearing loss and to find an audiologist near you, visit About the American Speech-Language-Hearing Association (ASHA) ASHA is the national professional, scientific, and credentialing association for 241,000 members, certificate holders, and affiliates who are audiologists; speech-language pathologists; speech, language, and hearing scientists; audiology and speech-language pathology assistants; and students. Audiologists specialize in preventing and assessing hearing and balance disorders as well as providing audiologic treatment, including hearing aids. Speech-language pathologists (SLPs) identify, assess, and treat speech, language, and swallowing disorders. Media Contact Francine Pierson, ASHA, 301-296-8715, fpierson@ View original content: SOURCE ASHA Sign in to access your portfolio
New York Times
21-02-2025
- Health
- New York Times
Why Raiders GM John Spytek and his wife, Kristen, are fighting for CMV awareness
When John Spytek introduced his wife and two young sons at his Las Vegas Raiders introductory news conference last month, the team's new general manager called his wife, Kristen, his 'rock.' 'You're going to see my wife around a lot,' he said. 'She is going to be a big pillar in this community.' There are a lot of empty words at these types of proceedings, but those were not. The Spyteks are co-founders of the National CMV Foundation, which they started after their daughter, Evelyn, died in 2014 at just 21 months old. She was born with a cytomegalovirus infection, or congenital CMV, and died following complications from surgery. Advertisement CMV leads to more birth defects in the country than any other virus, according to the Centers for Disease Control and Prevention, and yet many are still unaware of its potential damages. That's something the Spyteks hope to attack in the Las Vegas market, just as they did in their previous stops at Tampa Bay and Denver. 'It's more common than people think, and women and families have a right to know about CMV,' Kristen Spytek said. The foundation has grown in size and reach, becoming a national resource for families while raising money for research, diagnosis, screening, treatment and vaccine development. No such thing existed when Kristen was pregnant with her first child, when prenatal scans not only showed that Evelyn wasn't growing as expected but that her bowel appeared unusually bright on an ultrasound. 'We went in for the 19-week scan to find out if we were having a boy or a girl, and I can still remember the ultrasound technician quietly leaving the room and the doctor coming in and saying there were problems,' John Spytek said. Doctors did not mention CMV, or that it could be an infectious disease of any kind. Kristen, who had developed sinus-like symptoms, was left to search the internet as the list of all the problems that Evelyn was facing — the bright bowel, a small head as well as heart concerns — grew as she reached 32 weeks of pregnancy. 'And Google spit out CMV at us,'' John said. 'And we read about it and it was just horrible. And we were like, 'That can't be what it is or they would have told us.' But that's what it was.' Evelyn was born at 36 weeks, weighing 3 pounds, 14 ounces, and within 15 minutes a neonatologist told the Spyteks that he thought she had CMV. 'They confirmed it 24 hours later and by that point, there is nothing you can do about it,' John said. 'Now, the science has advanced where if you could diagnose this in utero, you can actually do a blood transfusion and some other treatments to try and save the child.' John has a tattoo of the sound waves of Evelyn's heartbeat over his heart, and at times he will touch it and hear his daughter's laugh. It's a calming moment in what has been a tough and now rewarding process to educate people about CMV. 'It's preventable, is what we keep talking about,' he said. Evelyn was eventually diagnosed with epilepsy, cerebral palsy, hearing loss and vision loss. She died on Dec. 26, 2014, after the Spyteks had started the foundation because they felt that she and other babies and families were depending on them to learn about CMV and spread the word. Advertisement 'The goal was to eradicate CMV in totality, and it turned out to be a pretty out-over-our-skis goal with how little CMV was talked about,' John said. 'So we wanted to raise awareness for expectant moms and families so that they don't have to go through what we did. And so that their children don't have to go through what Evelyn did, more importantly.' Cytomegalovirus is a member of the herpes virus family and, according to the CDC, between 50 and 80 percent of people in the United States have had a CMV infection by the time they are 40 years old. A CMV infection causes cold-like symptoms, such as a sore throat, fever, fatigue and swollen glands, but can also cause severe disease in babies who are infected with CMV before birth. About one out of every 200 babies is born with congenital CMV and, according to the CDC, about one out of five of those babies will have birth defects or other long-term health problems. Kristen, who has since given birth to sons Jack, 11, and Tommy, 8, has a marketing background and went to work right away to help create awareness. 'I wanted to set up a place for people like me — parents, caregivers and family members — to go and find information about this that was educational and informative,' she said. 'Not too scary, but geared towards prevention for families.' Some babies born with CMV don't show signs of it at birth and develop problems later, according to the CDC. 'We have been pushing for things such as research funding at the federal level, congressional bills and newborn screening,' Kristen said. 'A lot of babies are born without abnormalities or issues and then go on to have conditions such as hearing loss or epilepsy.' Moderna has been working on a vaccine for CMV, and says the testing is currently in Phase 3. 'There is still a ways to go,' John said. 'You learn that there is no quick fix to this and it's going to take years before people maybe don't get CMV anymore, but we're making progress.' Advertisement There is also a need for prevention education. Women who work around children, such as preschool teachers and daycare workers who feed children and change diapers, are at increased risk, as are parents who share utensils with their children. One of the foundation's goal is to get CMV placed on the Recommended Uniform Screen Panel (RUSP), a list of disorders recommended to be screened for as part of universal newborn screening programs. 'That would require everyone to be fully aware of it,' John said of inclusion on the RUSP list, 'and it would require doctors to educate the soon-to-be moms about the dangers of CMV and how you prevent it. It would shine a light on something that is a really big problem that people don't know exists. 'People would be shocked how many kids are born with it every year.' The foundation started with six members — family members and friends of the Spyteks — as an all-volunteer grass-roots group, and now has 11 board of directors members and four employees. 'We've raised a half-million dollars in our best years, but we still have a long way to go,' John said. 'We connect families regionally and state-wide, as well as with specialists,' Kristen said. 'And we create a safe space online and elsewhere for these families to engage and support one another.' And more and more future parents are learning about that space. John worked for the Tampa Bay Buccaneers for the last nine years, and several members of the organization — including players — wore CMV-logo adorned cleats as part of the NFL's annual 'My Cause, My Cleats' initiative, including for last season's game against the Raiders. We would like to thank the @bucaneers staff and @nfloncbs for supporting the National CMV Foundation during yesterday's #MYCauseMyCleats game against the @raiders. Stay tuned for details about the upcoming shoe auction!#StopCMV #GoBucs — National CMV (@NationalCMV) December 9, 2024 'It creates awareness that we can't get anywhere else,' John said. 'CBS did a 30-second camera shot of it and talked about CMV. And also, the energy that something like that gives to the base of our foundation and the parents that are in it every day … it's astounding. They get so motivated. 'Finally, people are paying attention to us. Finally, the message is getting out.' (Top photos of John and Kristen Spytek with their late daughter Evelyn: Courtesy of Kristen Spytek)
