In Georgia, a battle is being waged not with arms but with advocacy, as a mother seeks to bolster newborn screenings after her son's diagnosis with a common but potentially dangerous virus. Brooke Barnes, thrust into the world of hearing loss advocacy after her 3-year-old son, Mason, was belatedly diagnosed with congenital Cytomegalovirus (CMV), is calling for increased awareness and testing for the condition that struck her family without warning, FOX 5 Atlanta reported.
The incident began with an unsuspecting challenge; both Mason and his twin sister Milly were born seemingly healthy in 2020. However, Mason's journey took an unexpected turn when he failed a newborn hearing screening, a harbinger of a diagnosis that would later come to define a portion of his early childhood. "We had no idea that anything was wrong until he didn't pass his newborn hearing screening," Brooke Barnes told AOL News. At that time, the hospital where Barnes gave birth did not perform newborn screening test for congenital CMV. It was a realization that came months too late.
Congenital CMV is alarmingly common, with one in every 200 babies in the US being born with the virus, which is the leading cause of birth defects and hearing loss in children, as per FOX 5 Atlanta. The variety in the severity of hearing loss caused by CMV is vast and can range from mild to profound, leaving some children completely deaf. Ear, nose and throat specialist Dr. Kristan Alfonso highlighted the varying impact of the virus, saying that "Some patients only have hearing loss on one side. Some have [it on] both sides, some have mild hearing loss, and some have very severe hearing loss, in which they are actually deaf."
After failing the initial hearing test, the hospital sent a blood sample to the CDC to check for the CMV virus, a process that took months, during which Mason's hearing deteriorated further. "My theory is that he further developed hearing loss from the time of being born to, you know, us getting that official profound hearing loss diagnosis," Barnes said. Unfortunately, Mason missed the critical window for antiviral treatment that might have mitigated his hearing loss, because the cause wasn't identified until he was around three months old, according to the AOL News interview with his mother.
In response to situations like Mason's, the Georgia Department of Public Health is considering mandating hospitals to administer targeted congenital CMV screenings for all newborns who fail their initial hearing test. Commenting on the possible protocol, Dr. Alfonso outlined the goal: "So, whether or not they fail on the first or second try, then the goal would be that congenital CMV testing is then performed, to see if a patient has that virus that could be causing the hearing loss." Brooke Barnes hopes that heightened testing and quicker interventions will spare other families the unexpected challenges her son has faced and aid in early development for children like Mason, who now hears with the aid of cochlear implants.
