Did you know hearing loss impacts over 360 million people?1
I am one of them.
In this group, we all have hearing loss, but each have very different level of hearing and solutions. Some still have 50% of their hearing so they wear hearing aids. Some have little or no hearing and need cochlear implant. Or, some don’t use any of the solutions at all and use sign language.
In my case, I was born profoundly deaf and my solution was cochlear implant.
For the #MillionEar challenge I decided to share my story on my blog to help spread the word about hearing loss and hearing solutions to 2 million people. In this post, I will talk about my story receiving my cochlear implant and hearing sounds for my first time at age 4 1/2. The videos of me hearing my mom’s voice for the first time is in this post as well.
March 19, 1991, was the day. After 3 pushes, my mom brought me to the world. I took the ‘easiest birth’ title in the family. You’re welcome, Mom. haha. I was healthy, 7.6-pounder baby so my mom and dad took me home after 3 days in the hospital.
When I was 3 months old, my aunt, Susan, came to visit along with my grandparents. While she was holding me, she looked at my mom and said, “She can’t hear.”
“Susan!” My grandma exclaimed, couldn’t believe she would say such thing. And my parents didn’t even think about it after. They didn’t think it was possible.
But, as I grew as a baby, my parents grew more concerned.
I had tons of ear infections like my two older siblings so I had tubes in my ears quite often. My parents were concerned that I wasn’t hearing that well, but the pediatrician told my parents that the ear tubes would help me to talk better.
Well, I wasn’t getting any better. There were other concerns came up like I wasn’t walking at 18-months-old.
Every time my grandparents came to visit us in Sacramento, they told my parents to get my hearing checked, but my mom told them that the pediatrician said that I was fine!
But my mom listened to my grandparents’ advice and insisted to the pediatrician to get a hearing test done on me. The pediatrician referred her to an audiologist at a hearing and balance center in the Sacramento hospital.
“Your daughter is deaf.”
“Your daughter is profoundly deaf,” were the words the audiologist told my mom as she was holding me. She was shocked because she didn’t know it was that severe. The audiologist told my mom again, “Your daughter has never heard your voice or anything.”
When my parents came home, they had no idea where to start. My older brother asked my mom, “Will she ever say my name?” My parents sadly told him, “I don’t know.”
Both of my parents took me back to the hospital the next week and I had the ABR test where they hooked my brain up to electrodes to see if I was getting any sounds. I had to be asleep for it so my mom somehow got me to sleep to get the test done. Then the audiologist told them that they should try hearing aids on me and to start teaching me sign language.
My poor mom. She has never been so overwhelmed in her life. She had no idea where to start. It was all new to her. They had no family around and they were devastated.
My First language- Sign Language
My mom said that it was amazing how Heavenly Father started sending people to them to help. My parent’s pressure relieved so much by His help. My parents bought a sign language book and they started teaching me sign language like crazy to make up my first two years of nothing.
It’s critical for kids to learn a language the first few years of life so that the child can take advantage of the unique window of time during which the brain is most receptive to learning language, whether spoken or signed.
When I was 2, my whole family learned sign language together. We learned sign language through a class at a baptist church. According to my mom, I learned sign language fast because I knew they were putting words with signs at the very beginning. So I was able to communicate with signs within two weeks. My mom said that I lit up when we were able to communicate to each other in sign language. The biggest milestone was when I used two signed words together. I also enrolled in a deaf preschool at age 2 to learn sign language quicker.
Beginning of Cochlear Implant
Later, my parents went to a seminar about the cochlear implant and asked the doctor about it. The doctor told them that he wouldn’t put the cochlear implant on his child and that the surgery is too risky. So they forgot about it.
When I was 2 1/2, my dad was offered a great job offer in Boise, ID so we moved there. I couldn’t start the deaf preschool until I was 3. So until then I worked with a speech pathologist who I worked with for another 13 years of my life. She’s a pro with what she does.
We started with tactaid, which is a vibration stimuli for sounds. We ditched that because it wouldn’t help me improve my language at all. Let alone let me hear sounds.
Then we tried hearing aids. That didn’t work either because hearing aids only help people who have SOME hearing to amplify the sounds. I have NONE, therefore, hearing aids didn’t help me at all.
“You need to get her cochlear implant if you want her to talk.”
My speech pathologist finally told my parents that the only way I could learn how to hear AND talk was to get me the cochlear implant.
Back then, the deaf community despised my parents’ choice on getting me cochlear implant because it ruins the deaf culture.
I will tell you this right now. I am forever grateful for their choice. If they waited or never got me cochlear implant, I would be a different person. In my opinion, I would be on a different path with limited opportunities. I respect those who chose to not get cochlear implant or waited to get one. If it was my child, I would get her or him cochlear implant right when they’re able to.
So What is Cochlear Implant?
A cochlear implant is an electronic medical device that does the work of damaged parts of the inner ear (cochlea) to provide sound signals to the brain. –Cochlear Implant website
Here’s a video on how it works
In 1995, my parents and I flew to Salt Lake City to get a surgery done on my left ear. I was four and a half. Back then, it was a risky procedure because it was all so new. Because of that, they only could do it on one side. My left ear. To keep the story short… they basically cut my ear open and inserted the electrode array in my cochlea.
Video on Before, During, After Surgery
Receiving the External Cochlear Implant
I had to wait for few weeks/months (not sure how long) before getting the external device. My parents and I flew back to Salt Lake City to program “mapping” my cochlear. I had to sit and listen to countless beeping sounds. Soft, high, low, or loud beeping. It goes something like this. *Silence for 30 seconds* *Beep… beep.. beep* *Silence for another 30 seconds *Beep *beep *beep. Different level of pitches and volume every group of beeps.
The purpose of mapping is to program the cochlear implant to specifications and needs of its user. I had to go back to the audiologists every three months to hear those annoying beepings for the first year and then annually for rest of my life.
I hate mapping.
I usually cry after these appointments because I hate how the sounds sound different every time after the mapping. I hate changes. It takes couple days to get used to it. I would try to avoid them by hoping that my mom would forget to make an appointment for that year. haha. Never worked. My mom always remembered. 🙂
I am better with it now that I am older and more mature (maybe) ;). I’ve experienced it so many times so I am used to it…
It’s good to get it mapping at the end because the audiologist tests that I am hearing what I need to hear.
First Mapping Ever
I don’t remember the specific memory of my first mapping, but my parents took a video of it. But I do remember when I was younger thinking, “What am I supposed to hear!??” That’s what probably I thought during my first time during the mapping since I haven’t heard any kind of sound for first 4 1/2 years of my life.
Video of Me Hearing My Mom’s Voice for the First Time
My First Sound Memory
I honestly don’t remember anything that happened in the video. I was so young, but I do have a small memory of coming out of the hospital and hearing the huge rumbling sound.
It was an airplane. But I didn’t know what it was.
I looked at my mom, She signed airplane and pointed to the sky. I connected the sound and its meaning. Ah, that’s the sound of the airplane.
Evolution of Cochlear Implant
One of the things I love about cochlear implants is that their technology continues to improve tremendously. As you can see in the picture above I wore a big box on the front of my body.
When I started school, I wore it under my shirt so you’d see a big box shape sticking out in front of my body. I looked like an Iron Man. Sweet. But it wasn’t all sweet and peachy.
The body straps were so hard to get off by myself. Taking it off and back on every day was a chore. My best friend had to help me to take it off if we wanted to go jumping on the tramp without taking off my shirt. The straps would sometimes peek out from my shirt collar so it looked like I had a bra really young. I remember there was a boy in my 3rd class announced to everyone, “Amy has a bra! Amy has a bra!” I was so embarrassed.
I hated it. All I wanted is to get rid of the body box. I wanted the ear level cochlear with no box computer strapped on my body.
My wish came true in 2002. It was the best Christmas gift ever.
Improved Cochlear Implants
My life got significantly easier after that. Every five years, I get updated cochlear implant. The cochlear I have right now, Nucleus 6 sound processor (I got it in October 2015) has some awesome features. It’s waterproof (I can swim with it now! with the Aqua+ accessory. I can also listen to music and talk on my phone without headphones using Bluetooth phone clip.
So What Happened After I First Received my Cochlear
I did speech therapy for sixteen years after that. I had to learn all kinds of sounds: phone ringing, toilet flushing, lawn mower, each letter sounds, etc. etc. etc. Also, I had to learn how to talk. That’s a story for another time. I can’t write a novel on this blog. ha.
I also found out my diagnosis of Usher Syndrome when I was 9. That’s also another story for later.
My main purpose of writing this post is to spread the awareness about the cochlear implant for #MillionEar challenge this month. I hope this will help someone out there as cochlear implant has helped me in many ways every day of my life.