Doni came into this world as a beautiful, healthy baby boy after a routine pregnancy. When he failed his newborn hearing screening on the left side, the doctors reassured us it was nothing to worry about. “C-section babies always have fluid in their ears,” they said.
A month later, the hospital tested his hearing again and passed him. We trusted the results, but deep down, something felt off. We now believe it was a false pass.
The Years of Not Knowing
What followed were years of searching for answers we didn’t know we needed. Doni was colicky and suffered from constant ear infections and stuffiness. We made countless visits to ENT specialists, ultimately having ear tube surgery at nine months and adenoid removal surgery at age three—yet not a single doctor diagnosed what was really happening.
I thought maybe it was ADHD or he had trouble focusing, but I couldn’t shake the feeling that we were missing something bigger. We moved to a new town and when Doni had a routine physical with a new doctor at age five, we finally heard: “During the hearing test, I turned the volume all the way up on the left side and he never raised his hand. You need to get to an audiologist right away.” Only a week later we saw the words “profoundly deaf” on paper.
The diagnosis felt like a punch to the gut. We had been leaned-in, attentive parents. How could we have missed this? How could everyone have missed this? We reached back out to teachers, friends and family, and every person replied that hearing loss never crossed their mind.
From Fear to Purpose
For a while, the shock turned into fear. Fear of the unknown. Fear of what challenges lay ahead. Fear that we wouldn’t know how to support him the way he deserved.
Then Jennie (Doni’s mom) decided to channel that fear into something meaningful. She joined the Hearing Loss Association of America (HLAA) Board of Directors as the first-ever parent of a child with hearing loss. The board welcomed Jennie with open arms, eager to hear her perspective and help other parents who are navigating similar journeys.
Through HLAA, Jennie and Doni were introduced to a community of wonderful, successful people living with hearing loss. This community taught us so much about resilience, advocacy and hope. Doni received a cochlear implant at age six and now has mentors he can call when he needs support—and so does our family.