By Abe, with input from his mom
It was at the end of 4th grade, the first day of summer, when I was in the pool. When I got out, I had water in my left ear. I tried to shake it out, hopping on one foot and tilting it toward the ground, but my ear still felt clogged. This had happened before, so my mom and I didn’t think that much about it and figured it’d go away on its own.
Two days later, after my ear still felt clogged and we were on a family vacation, my mom called our doctor’s office. They recommended an earwax kit to help unclog my ear. We tried it twice but it was still the same.
Then we went in person to see the pediatrician, who diagnosed me with Eustachian tube dysfunction. The doctor said it’d take three to five months, all summer, for it to unclog. My mom says we kept going to the doctor, to two other pediatricians in the practice, who all said the same thing—just to wait.
And then finally in September my mom wanted something to change. She says she realized I couldn’t hear out of my left ear because when we were at synagogue she spoke to me in my left ear, and I turned my head all the way around so I could hear out of my right ear instead.
My sister had an ENT (ear, nose, and throat specialist) because she broke her nose that year. I went to her ENT, and he immediately sent us down the street to see an audiologist. That’s when we learned that I have a hearing loss in my left ear.
We had to do lots of tests for a year to make sure there wasn’t some other medical issue, like a tumor. When I got an MRI I remember there were wildfires going on and it smelled like smoke in the room. I was missing so much school for these tests that I didn’t want to go anymore, so we scheduled the appointments for evenings. In addition to hearing tests every three months, I also had genetic testing but it didn’t reveal anything.
I don’t really remember this but I was exhausted every night, too. I wasn’t sleeping well because of my ear. The doctor said my sleep was probably being affected from my brain having to work so hard to hear all the time. At night I just couldn’t quiet my brain down after all the effort of trying to hear, so I wasn’t falling asleep easily. It really worried my parents.
Eventually my mom started preparing me for the idea of using something to help me hear. We were driving on the way to Hebrew school, and she said, “I think you’re going to need a hearing aid.” And I was like, straight up, no. I thought it’d be embarrassing, with people asking me, “What is that thing in your ear?”
We went back to my sister’s ENT, who didn’t think I needed a hearing aid since I had one fully functioning ear. My mom got a second opinion at UCSF Benioff Children’s Hospital, and Dr. Chang there recommended I get a hearing aid for sure. My audiologist, Dr. Newman, gave me a tester, silver colored, to try out for a while at home and school. We also went to Stanford Children’s Health to get a third opinion, since the two doctors before had opposite opinions for treatment, and the third doctor said to definitely get a hearing aid.
My parents and sister noticed I could hear better using the hearing aid tester at home, and that made me a little more comfortable about wearing it at school in 5th grade, which for us is the start of middle school. The first time I finally decided to wear the hearing aid full time, I’d just gotten a haircut, so two of my friends noticed. Eventually I did get a brown hearing aid to match my hair color. People sometimes ask what it is, and I just say it’s a hearing aid to help me hear.
There are other little things I need to do, like making sure I sit up front in class so I can hear better, but I also don’t like assigned seats and like to move around. We learned that the only other student with a hearing loss in my school happened to be in the same class. Their family has been really helpful.
Although I’ve definitely adapted to wearing the hearing aid, and can even keep it on for sports like baseball because it fits under my helmet, masks during the pandemic have been hard. With teachers and classmates all behind masks, I really had to ask other people to repeat themselves.
I keep asking Dr. Newman, “Do you think you’ll ever be able to fix my ear?” She replies, “Probably. We’re working on it, and we really hope we can do it in your lifetime.” So while studying Hebrew to prepare for my bar mitzvah, and in the middle of the COVID-19 craziness, my mom found Hearing Health Foundation and its mission to prevent, research, and cure hearing loss.
For my bar mitzvah project, I am doing a fundraiser for HHF. It makes total sense to support this mission that means so much to my family and me. And one silver lining, my grandfather finally got hearing aids, and my great-grandmother upgraded her 20-year-old hearing aids. We like to think it was because of my experience. We’re a hearing family!
Now in 7th grade, Abe turned 13 in September, and his bar mitzvah is in October. The family lives in California. Hearing Health Foundation sincerely thanks the family for their support.
Our results suggest that mature cochlear supporting cells can be reprogrammed into sensory hair cells, providing a possible target for hair cell regeneration in mammals.