I was born prematurely at 26 weeks in Bethlehem, Pennsylvania and required extensive medical intervention in order to survive. Although I passed my newborn hearing screening test, I was diagnosed with sensorineural hearing loss in both ears when I was seven years old. The doctors thought that the extracorporeal membrane oxygenation (ECMO) machine which I was put on shortly after my birth may have caused my hearing loss.
Hearing aids did help, but I was still struggling in noisy environments and interacting with people, and I felt socially isolated. I would avoid going out and being in noisy environments. I would also get in trouble for behavior that was the result of my hearing loss. It was extremely frustrating that people assumed that I wasn’t paying attention when I was simply tired from struggling to hear all day at school.
A few weeks after I graduated from high school, it was discovered that my hearing in the left ear was worsening. That’s when my doctor suggested that I start thinking about getting a cochlear implant. Because I was already 18 years old, I had to be in charge of making this decision. My parents couldn’t make the decision for me, but they helped me understand the process, so I knew what to expect.
I would also get in trouble for behavior that was the result of my hearing loss.
My mom’s biggest fear about me getting a cochlear implant was that after the surgery, I would lose the rest of my natural hearing. I had the same fear, but my hope for a cochlear implant was to be able to hear in the water, be able to interact with people, and not be stopped from going to places. I also hoped that I would be able to hear and understand others in noisy environments.
When I met with my surgeon at my ENT Clinic at Boston Children’s Hospital, he decided that since I still had a Phonak hearing aid on my right ear, an AB cochlear implant would work well with my hearing aid. Also, I learned that AB had a waterproof processor that I can wear while I’m in the water. I was excited about that because I’m an active person who loves swimming, but have never been able to hear and communicate with others while I’m in the water.
On May 16, 2019, I underwent my first cochlear implant surgery. The surgery was supposed to take four hours, but it took seven and a half hours because they discovered that my facial nerves were unprotected. They had to do the procedure very slowly and carefully so they didn't accidentally damage my facial nerves and my cochlea. I also had to stay overnight at the hospital after the surgery.
I can hear and understand people when I’m in the water.
Weeks later, when I got my cochlear implant activated, one of the first sounds I heard was someone’s stomach growling. At first, I thought it was my own stomach, but it was actually my dad’s. I was really surprised and excited at the same time, since I have never been able to hear other people’s stomachs growl.
The cochlear implant changed my life in a variety of ways! I love my Neptune waterproof cochlear implant processor. I can hear and understand people when I’m in the water. I love hearing the sound of ocean waves. I can easily identify environmental sounds, such as cars passing by and airplanes taking off. I can also hear music and phone calls better.
It’s also been fun discovering new sounds, such as my dog chewing, the sounds of the washer and dryer, the sound of food sizzling on the stove, and even traffic and construction noise. But perhaps most importantly, I can now hear the sound of cars passing by, especially when I’m in busy cities. My cochlear implant keeps me safe.
I’m still having a little trouble with phone calls, but I’m making progress. At first, music sounded like Minnie Mouse and Darth Vader, but it’s starting to sound more familiar and clearer. I was doing very well with a cochlear implant on my left ear and a hearing aid on my right ear, until 2021.
In February 2021, I started to notice that I was having trouble hearing out of my right ear. I remember this particular moment when my mom and I took a walk. She was trying to have a conversation with me, but I wasn’t responding to her. She asked if I was hearing okay with my cochlear implant, but it was my ear with the hearing aid that wasn’t right. Another hearing test revealed that I had lost all of my hearing in my right ear.
I could hear nothing in my right ear. So, the option was to get a CROS hearing aid for my right ear, which would send the signal from the right to be heard in my left ear with the implant, or get another cochlear implant. My family decided to go for the second cochlear implant.
I had my second cochlear implant surgery on September 21, 2021 at University of Virginia Medical Center. This time, the surgery took only three hours and 40 minutes, but I spent five hours in the recovery room because I was so out of it and was in so much pain. I wish I could have stayed overnight, but with COVID, the hospital was putting limits on how many patients could stay at the hospital.
Thankfully, the pain from the surgery was worth it and I’m happy to say that having two cochlear implants is better than having one. I currently have Marvel CI processors on both ears, and my favorite part about them is that I can stream music, videos, phone calls, etc., via Bluetooth directly to my ears! I don’t have to connect any other equipment to my processors before streaming.
I still love wearing my Neptune on my left ear and my waterproof case for the Marvel on my right ear when I go swimming. I also discovered a special swim cap designed for cochlear implants users which I like very much.
Through this process, my biggest lesson was to be patient. If you don’t hear right away, that’s totally okay. It will get better. Don’t expect things to be perfect overnight. It takes time and practice before sounds start to sound normal. The more you practice your hearing rehab and wear the processors all day, the better it gets. But, it’s important to take breaks and not overdo it to prevent hearing fatigue.
Yes, there’ll be lots of appointments, and surgery does seem scary, but we are lucky to have amazing surgeons and audiologists who help us get through the fears and nervousness. They can answer any questions and concerns you have about the process. You are also more than welcome to reach out to AB with any questions and concerns about the devices and the process.
For people going through the journey, good luck! You will do amazing!