Brooklyn and Pia: From Hearing Loss to Lifelong Friends
Brooklyn Ballein and Pia Rizek are besties. As active 6-year-olds, they enjoy using their imaginations, doing gymnastics and giggling during sleepovers.
But the two friends, and their families, have something else that bonds them—both girls were diagnosed with congenital cytomegalovirus (CMV) that resulted in sensorineural hearing loss. And as patients within the Division of Audiology, Brooklyn and Pia are thriving more than ever because of early action and dedication from their parents.
Some babies born with CMV (i.e., congenital) have no symptoms. Others, like Brooklyn and Pia, can have short-term or long-term symptoms, such as hearing loss. Unfortunately, it’s hard to tell if a baby has CMV without testing. And oftentimes, testing doesn’t happen unless a baby shows specific symptoms.
In Ohio, all babies are required to complete a universal newborn hearing screening test. In the past, a failed hearing test wouldn’t necessarily result in a child being tested for CMV, even though it’s the leading cause of non-genetic hearing loss. For a confirmed congenital CMV diagnosis, a CMV test must happen within 21 days of birth. That’s what happened for both Brooklyn and Pia.
Pia and Brooklyn’s Diagnosis Journeys
Pia failed her hearing test on day one.
“It’s a very tricky situation because a lot of newborns fail their hearing screenings,” said Pia’s mom, Britt. “Hospitals are good at saying, ‘It’s probably nothing. Don’t worry about it. Come back in six to 12 weeks to get her screened again.’ We came back much sooner than that."
Pia’s parents quickly noticed that she wasn’t responding to any noises. They were referred to Cincinnati Children’s for another more in-depth hearing screening.
“The whole time, you have your fingers crossed that she’s not deaf,” Britt said. “But you see the computer screen, and there’s just flat lines going across where you know it’s supposed to be going up and down when they have hearing."
Four hours later, the test confirmed that Pia had complete hearing loss in both ears.
Brooklyn’s story is similar, but different. Her parents met her when Brooklyn was just five days old as her foster parents. At the time, they didn’t know she had hearing loss. Brooklyn’s social worker cited a failed newborn hearing test, and suggested that she get re-tested. Re-testing confirmed that Brooklyn had complete hearing loss on her right side and slight hearing loss on her left side. Over time, the hearing on the left side would get worse.
Their pediatrician referred them to the Division of Audiology at Cincinnati Children’s, where Brooklyn was also diagnosed with congenital CMV, in addition to the hearing loss.
“I was in complete denial,” Brooklyn’s mom, Megan, admitted. “When they first told us that she had hearing loss, I thought, ‘No, she doesn’t. Look, she turns and looks at me. Clearly, she can hear me.’ That newborn screening definitely changed her life.”
Finding a Support System, Deciding on Treatment for Hearing Loss
Both Britt and Megan did a lot of research after finding out their girls’ diagnosis. They also happened to join the same Facebook group for parents of children with CMV.