I was born in 1988 with Microtia/Atresia of the right ear. At that time, not much was available in the way of aids, at least from what the doctor my parents took me to said. The only option was surgery. Lots of surgery. Nine summers worth of surgery that ‘may’ help me hear to an unknown degree. So they were advised to do nothing and that new medical advances would hopefully be made in the future. They, to my knowledge, never looked into it again. It was left up to me, from as early as I can remember, to make a decision if I wanted anything done, and of course the 9 surgeries were mentioned so I didn’t pursue it.
In school, I excelled, even with my hearing disability. The only exception was in my fifth grade math class. We rotated seats monthly. One month I was sat in the back of the classroom, with my good ear to the back of the class, at a table with chatty students. I went from getting “A’s” to “D’s” that month. When my parents called the teacher to ask that my seat be changed, she told them it couldn’t, because “the rich kid’s parents might get upset”. Luckily math is pretty easy for me and that month didn’t set me back very much. I just had to do extra homework for a while.
My parents never treated my any different than any other kid. In fact, to this day (I’m now 25) neither one of my parents ever remember what side I can’t hear on (for when we’re walking and talking, etc.)! That’s frustrating, but I’ve learned to be patient with everyone when they come up to me on my deaf side. I just ask for them to move to my other side because I’m “deaf in that ear and can’t hear” them.
It wasn’t until high school that I learned to be an advocate for myself. It’s not something my parents really taught me. I would ask to be sat on the right side of the classroom in the front row so that I could hear better. I graduated in the top 10 of my class, in a class of about 230 students, at one of the top high schools in my state.
As far as socially, I was quiet, but had close friends. I also hated parties or any large groups of people; they gave me a lot of anxiety.
As I got older, I was more frequently around people that did not know I couldn’t hear out of my right ear, and slowly – very slowly – this became more frustrating and anxiety producing. I was constantly fearful of accidentally ignoring someone – especially while working retail. In 2011, at 23 years old, someone asked me why I didn’t look into seeing if the number of surgeries had been reduced, because insurance would probably cover it as ‘medically necessary’. This was the little push I needed. I told my Mom I wanted to look into doing something about my ear, and began researching.
After happily finding out that the number of surgeries had been reduced, I thought I might actually look into it. After finding out that it still didn’t guarantee any percentage of hearing restoration, I took a step back and looked into what the websites kept mentioning: BAHA’s. After doing more research, I found out that a BAHA would guarantee me good hearing, and would require much less invasive, and many less, surgeries. I set an appointment with an ENT.
By doing a C.T. scan, and holding a tuning fork at various places on my head and asking me which side I heard the noise on, my ENT determined I would be a good candidate for a BAHA. I set the surgery date for after I graduated from college, in June of 2012. In the mean-time, while across the country at school, a local hospital loaned me a BCHA. I was already in love with even that much of an aid. It wasn’t until after I got my BAHA that I realized how much even a BCHA doesn’t help! With a BCHA, sound is taken from the working side of your head and transferred to your ‘bad’ side. Thus, I still couldn’t hear anything that was close to me on my deaf side. It also just amplifies sound, like hearing aids. In addition, it hurt my head when I wore it. With the BAHA, I can actually hear noises that originate from the right (‘bad’) side of my head! I am also finding that I have, at least to some extent, the ability to locate where sounds originate from, something I could never do before. As I get more comfortable with my ability to hear from both sides of my head, I’m also experiencing much less anxiety around large or loud groups of people. In general, I feel like sounds are no longer two dimensional, but instead they are three dimensional. For those who have never experienced the difference, that is the best way I can put it to try and help you understand…sort of like in a car when you turn the bass all the way down and just have to treble playing, and then when you introduce some bass everything sounds fuller and more rich.
The surgery was also incredibly easy. I didn’t take any pain medication afterward, apart from what they gave me while I was ‘asleep’ in the O.R. I had virtually no pain following the surgery and started my first real job 6 days later! I think there is so little pain because during surgery, a lot of nerve endings are damaged (they grow back) and so, when I woke up, I had no feeling on pretty much the entire right side of my head. It’s been almost 8 months, and I’m down to just about a 3 inch diameter circle of numbness left. It doesn’t bother me, and I’d much rather have the ability to hear!
As a musician, getting a BAHA is something I am still adjusting to. I play the flute, and my BAHA makes a buzz when I play certain notes, but not consistently. I still haven’t found the pattern of why it does it sometimes and not other times. It also “whistles” along sometimes, a type of feedback. My playing is also much louder to me now. All of these things are an adjustment. At the present moment, I’m in deep enough that deciding to stop wearing my BAHA when I play would be just as much of an adjustment as continuing to try to learn to play with it on, so I’m not giving up yet.
Overall, getting a BAHA was one of the best decisions I’ve ever made. I can hear better, have less anxiety, and just enjoy sounds and music so much more now. For me, getting a BAHA was the right choice. I was old enough there was no worry of teasing (although I never was teased as a child anyway), comfortable enough with the appearance of my ear that I didn’t really care about fixing it’s appearance, and weary enough of atresia repair only restoring some of my hearing, that getting a BAHA instead just made sense for me and where I’m at.
My only advice for someone with Microtia/Atresia is to do lots of research before making any decisions and gather all the facts you can, meet with a doctor and discuss options, and, in the case of BAHAs, insist to be able to try different brands before you choose one (something I unfortunately didn’t have the option of, nor the knowledge of, when I made my choice due in part to insurance reasons). My only advice to parents of children with Microtia/Atresia is to treat your child as normal as possible, don’t let them use their hearing issue as a crutch or excuse (unless it’s really a valid one!), teach them to be an advocate for themselves in and outside the classroom, and teach them how to politely ask someone to switch sides – while also explaining why it’s necessary – if they can’t hear them. I wish you all the best of luck in whatever paths you choose!