By Audiologist Michele DiStefano
As some of you may know, CMV is a virus that can cause hearing loss and other serious long-term health problems for babies infected before birth. I'm deeply committed to educating the public—especially young adults and expectant parents—about the health risks of CMV and the importance of early identification and intervention. So, in recognition of National CMV Awareness Month, I'd like to put a spotlight on CMV and share vitally important information. But first, let's hear from a CHC mom who shares her firsthand experiences with CMV.
A Mom's CMV Story
Hello! My name is Danielle Larsen. I am a mom to two amazing girls, Savoy, age 10, and Elodie, age 8. Elodie is my cCMV baby.
I had never heard of CMV before Elodie was diagnosed at four weeks old. She failed her newborn hearing screen and was diagnosed with severe to profound hearing loss in one ear and moderately severe loss in the other. We were searching for answers. With no family history of hearing loss, Elodie’s pediatrician ran her blood for CMV. She was positive. We rushed to the hospital for a full medical work-up. It was the scariest moment of my life.
The first year of Elodie’s life was a blur of doctor visits. My husband and I doubted ourselves often. Are we doing the best we could for her? Elodie’s incredible team at CHC and her amazing infectious disease doctor at Weill Cornell got us through those dark days. We opted to put Elodie on an antiviral treatment, trusting it would stop the damage, and possibly reverse some of her hearing loss. Elodie was a happy little soldier, going from appointment to appointment, almost never fussing - except she hated getting ear mold impressions. Luckily Dr. Michelle DiStefano and team are pros and always came prepared!
Flash forward, Elodie has bilateral cochlear implants and still wears ear molds, but now only for retention. She loves choosing the sparkly colors, same with her cochlear implant stickers. She is a bona fide Swifty, but also rocks out to Avril Lavigne, such a throwback! Elodie is top of her class in reading and loves school. She is a budding basketball and volleyball player and competes in Irish Dance with her friends. We are so proud of her. Looking back on this journey so far, I have realized that it was a miracle. Through God’s grace, our family is stronger and more compassionate because of Elodie.
More On CMV from Audiologist Michele DiStefano
Thank you, Danielle, for sharing your family's CMV story. I'd like to add a few facts about CMV and examine its prevalence and screening protocols.
Cytomegalovirus (CMV) is a common virus found in people of all ages. Those infected with the virus might experience symptoms similar to that of the common cold—fever, congestion, coughs—or they might have no signs or symptoms at all.
The virus itself does not pose any health risks for children and adults. However, CMV can cause serious long-term health problems for babies born with it. CMV is the most common congenital viral infection and the leading non-genetic cause of deafness in children. Approximately 1-in-5 infants born with CMV will have long-term health effects, including hearing loss.
Prevalence of Congenital CMV
Every year, as many as 40,000 infants in the U.S. are born with CMV. At least 20%—up to 8,000—develop permanent disabilities such as hearing loss, microcephaly, intellectual deficits, and vision abnormalities. CMV can be detected within the first 2-3 weeks after birth via saliva and urine.
Hearing loss and Congenital CMV (cCMV)
Universal newborn hearing screening ensures that all infants born in the U.S. have their hearing tested at birth. This allows for an opportunity to screen babies for CMV as the etiology. Approximately 30-50% of those infants born with symptomatic CMV have sensorineural hearing loss in one or both ears. The remainder of the infants born with CMV may develop hearing loss within the first two years of life.
Hearing loss due to cCMV varies in severity, can impact one or both ears, and can progress. The pediatric audiologist plays an integral role in diagnosing, treating and monitoring the hearing loss associated with cCMV. Even if the infant is not born with a hearing loss, the child’s hearing must be monitored. especially in the first two to two-and-a-half years. Early identification and intervention are crucial to support communication development, particularly in children with additional medical or developmental challenges.
Recent Developments in CMV Screening and Treatment
Recent studies have examined the effectiveness of antiviral treatments like valganciclovir. While these treatments may delay or reduce the progression of hearing loss, they do not prevent or reverse the hearing loss. In addition, they do come with potential side effects, such as neutropenia, requiring careful monitoring.
Screening practices are evolving. Some states have implemented hearing-targeted early CMV (HT-CMV) screening, which involves testing newborns who fail initial hearing screens for CMV. This targeted approach helps identify the virus early, allowing for timely interventions and avoiding unnecessary tests later. Additionally, there are ongoing efforts to implement a universal CMV screening at birth supported by the fact that cCMV can have late onset health effects.
Help Spread the Word
Help us make CMV top of mind for young adults and expectant parents. Share this post so others will learn the risks associated with CMV and make informed decisions about their baby's hearing and health care. If you have questions related to CMV, contact me using the button below
Best wishes for a healthy and happy summer.
About the Author
Michele DiStefano, AuD, CCC-A, is Director of CHC's Shelley and Steven Einhorn Audiology Center and Berelson Hearing Technology Center. Dr. DiStefano joined CHC in 2017 with expertise in pediatric audiology honed at Beth Israel Medical Center, Clarke Schools, and New York Eye and Ear. A graduate of the audiology program at CUNY-Brooklyn College, Dr. DiStefano sees children and adults at CHC with a focus on comprehensive diagnostic testing, fitting of amplification/FM systems, post-fitting counseling and Early Intervention.
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