When Kathleen Brown was pregnant with her daughter Alyssa, she’d never heard of cytomegalovirus (CMV)—or that it could cause hearing loss in children. Like many families, the Browns learned about CMV through a diagnosis during Kathleen’s pregnancy.
This June, during CMV Awareness Month, the Browns are sharing their story to raise awareness and help other families find support.
What is CMV—and Can It Cause Hearing Loss?
Cytomegalovirus (CMV) is a common virus that affects people of all ages. In most healthy adults, it causes few symptoms or goes unnoticed. But when someone contracts CMV for the first time during pregnancy—called primary CMV—it can pass to the developing fetus, potentially causing congenital CMV.
CMV is the leading non-genetic cause of sensorineural hearing loss in children. Some children show symptoms at birth, while others—like Alyssa—are diagnosed early because of newborn hearing screening and proactive monitoring.
“I was diagnosed with a primary CMV virus at the end of my first trimester while pregnant with Alyssa,” recalls Kathleen. “We confirmed that the virus had passed to Alyssa through an amniocentesis around week 20 of my pregnancy. At that point we learned much more about the virus and its potential effects on Alyssa.”
“The diagnosis of CMV was an extremely stressful experience that led to a lot of uncertainty for all of us,” adds Alyssa’s father Keith. “During the last two trimesters of Kathleen’s pregnancy we did not know what to expect. Although all of the tests on Alyssa seemed positive, we were prepared for a wide range of outcomes upon her birth. Those six months were probably the most stressful times of our lives.”
Early Identification Led to Robust Early Intervention Support
Baby Alyssa did not pass her newborn hearing screening at the hospital. Already aware of her CMV diagnosis, doctors kept her for six weeks to administer antiviral medication. Soon after, an ABR (Auditory Brainstem Response) hearing test at the Children’s Hospital of Philadelphia confirmed sensorineural hearing loss in both ears.
The Browns were immediately connected to early intervention services, and soon after, they found Clarke Schools for Hearing and Speech. “It was so comforting and helpful to be connected with other families going through the same things and to be connected with professionals who were experienced and could help answer our questions,” Kathleen says.
“When we visited Clarke, one of the children with cochlear implants spoke with a fairly strong Philly accent. When we heard this, we were amazed at the technology, and we knew cochlear implants were the best path forward for our family.”
The Path to Listening and Spoken Language
Watch Alyssa’s first cochlear implant activation at eighteen months old.
At around eight weeks old, Alyssa began receiving services through Clarke’s Birth to Age Three Program. At 18 months and then 21 months, she received two cochlear implants—a choice her parents made after visiting Clarke Pennsylvania and seeing firsthand what children with hearing loss could achieve.
“When we visited Clarke, one of the children with cochlear implants spoke with a fairly strong Philly accent,” Keith recalls. “When we heard this, we were amazed at the technology, and we knew cochlear implants were the best path forward for our family.”
Alyssa went on to attend Clarke’s Preschool Program and then received Clarke’s Mainstream Services when she progressed to a mainstream kindergarten classroom.
“Once we selected Clarke, Jeana [Novak, MA, MED, LSLS Cert AV Ed, Early Intervention Coordinator] came right out to visit us. She was so kind and so helpful, and we really could not believe the help that was being offered to us. Jeana went over what services could look like and invited us in to see the school. As soon as we visited, we knew that we wanted to be a part of Clarke.”
Over the years, Alyssa has navigated a range of environments—classrooms, sports fields, ski slopes and even boardwalk rollercoasters (where, yes, a processor was once lost!).
“When Alyssa was very young,” notes Keith, “it was often difficult to keep the implants on her head. We had some challenges when she was playing sports or wearing a helmet when skateboarding or skiing. But over time, we found solutions to all these issues.”
And with evolving technology, supportive teachers and a growing ability to speak up for what she needs, Alyssa has thrived.
Today, she is a 14-year-old ninth grader who plays tennis and runs track. She’s nearly fluent in Spanish after attending a bilingual elementary school. And she’s drawn to science and art.
Real Challenges, Real Growth
Hearing loss has presented real challenges—but also surprising opportunities. In loud environments or on windy days, Alyssa may still struggle to hear clearly, even with her implants. One of the biggest shifts as Alyssa has grown older, her parents say, is helping others understand that just because she hears well most of the time doesn’t mean she doesn’t face challenges.
“Now that she is in high school, our biggest concerns are making sure Alyssa speaks up for herself and that those around her are aware that she can, at times, struggle to hear clearly,” says Keith. “Alyssa hears so much better than we had expected, so the challenge is to make sure others are aware that there are situations where she will struggle to hear. Loud, crowded restaurants and windy days often present some challenges. She does so well in so many environments that many people don’t understand when she does face challenges.”
In noisy spaces, like a crowded restaurant, background noise competes with speech, making it difficult for hearing technology users to distinguish voices or specific sounds from the din. Wind can also interfere by creating distortion as it blows across the microphones, overwhelming the intended audio. Additionally, reverberation in large or echo-prone areas can blur speech sounds, further reducing comprehension. These challenges underscore that while hearing technology is significantly impactful for individuals who are deaf or hard of hearing, it does not restore hearing.
Despite these auditory challenges, Alyssa is clear about what she needs and finds creative ways to communicate when necessary. For example, social media and text-based communication have opened new doors for Alyssa, giving her more ways to connect with peers and navigate daily life with confidence.
“The best advice we suggest is to visit programs like Clarke right away to see how well children can hear and speak with hearing aids or cochlear implants. It’s also important to remember, that the cochlear implants are only effective when coupled with services to help kids hear and speak.”
Advice for New Families Facing CMV-Related Hearing Loss
The Browns emphasize that no two CMV stories are the same. “CMV can lead to a wide range of outcomes,” says Kathleen. “For Alyssa, the only clear outcome has been hearing loss.”
Their advice to other parents? Visit programs like Clarke early. “The best advice we suggest is to visit programs like Clarke right away to see how well children can hear and speak with hearing aids or cochlear implants,” says Kathleen. “It’s also important to remember, that the cochlear implants are only effective when coupled with services to help kids hear and speak.”
This June, during CMV Awareness Month, they hope more people will learn what CMV is—and how early detection and early intervention can change the story.
