I have had microtia my entire life, so I don't know any different.
The main thing to convey is that, for the most part, I don't think I was very self conscious about having microtia as a kid. I had friends. I had fun. I was (and am) happy.
The vast majority of the time, my microtia was about the last thing on my mind. However, there were times, due to health concerns, teasing, and learning challenges, when my microtia was front and center. That is the reason why I created this website.
From when I was a baby until I was six years old, I wore a device called a bone anchored hearing aid ("BAHA"). For people with bilateral microtia, a BAHA is sometimes surgically affixed to a person's skull. The BAHA helps conduct sound through the person's skull which is an effective way to conduct sound. You probably remember the childhood game of "Telephone." When the game worked, it was because sound is conducted more efficiently through solid material than through air. The sound would travel through the solid string. (The game wouldn't always work - but that's the theory behind it.)
The way that a BAHA works is that a microphone in the device picks up ambient sound and sends sound vibrations to the bone (skull) which are then picked up by the inner ear and transmitted as electrical pulses to the auditory nerve to be interpreted as sound by the brain. In other words, the BAHA can bypass the outer and middle ears, which require transmission of sound through the air. Instead, the BAHA sends vibrations directly through bone (the skull) to the inner ear which then stimulates the auditory nerve.
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| This is me at around 4 years old. After I "lost" my BAHA, my parents fastened my BAHA with clips. |
Multiple manufacturers make bone anchored hearing devices. Mine was by a company called Cochlear.
My BAHA (see below) was not surgically affixed. I had a BAHA with a headband that I could remove. The BAHA device, itself, was about 3/4" x 1/2."
I can't remember much about those years, but I'm guessing that having to wear an elastic headband (mine had primary colour Martians on it) with a vibrating, plastic box attached to it was not what I wanted to be doing when I was at school.
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| BAHA about 4x actual siz |
I wore my hair on the long side, too, which is what a lot of kids with microtia do. It's not to hide the microtia, per se. I think my parents kept my hair on the long side because they thought it was cute, and it also happened to make it so that the microtia wasn't the first and only thing someone noticed when they met me for the first time.
With the headband and long hair, I went through preschool and kindergarten with some people initially thinking I was a girl.
One day when I was four, I decided to throw my ($7,000) BAHA in the garbage at lunch. My parents never found that BAHA, but somehow, that strategy didn't work. I ended up having to wear another BAHA, this one with a navy blue headband, for a few more years.
When I started a new kindergarten, the principal asked my mother if she wanted to come and talk with the class about my ear. I don't know if it was right or wrong, but my mother said:
"No. Ben is going to have to learn to discuss his ear on his own. He will not always have his mother there."
So I learned to explain my ear in ways that people could understand.
When I was very young (pre-school and elementary school) - before people are taught to filter their questions - new classmates and friends would ask me:
"What's wrong with your ear?"
Before my surgery (when I was five and a half years old), I would tell people:
"That's my little ear."
After I received my reconstructive surgery, people would still ask me about my ear because it did not look exactly like the other ear. I would tell them the truth:
"I had surgery on it."
They would usually say, "Oh!" and that was usually the end of it.
Sometimes it was not the end of it, though. A comment that a few friends in primary school said was:
"Ewww. Your ear looks like rotten meat."
My best friend said:
"Don't worry about them. I like your ear."
"Don't worry about them. I like your ear."
I grew to like and even be proud of my ear.
As I've gotten older, I think back to my 4-year old self, my 6-year old self, my 8-year old self, and so on.
How did I deal with these questions and comments?
I've fielded questions and comments about my ear and shared information about my ear my entire life, so I'm used to it. It helps that my parents and three brothers have never made an issue of it. For my parents, it's kind of like having a kid who gets sunburnt easily. Parents are conscious of it and make sure the kid doesn't get sunburnt, but it doesn't define the kid. Likewise, microtia is part of who I am, but it has never defined me.
Interestingly, I wasn't even aware that anything was different about myself until I went to this therapist who kept on asking about my ear and how it made me feel. (See "Therapy" for more info.) One thing is for sure: my parents certainly don't let me off easy because of my disability.
Bullying and Teasing
When I was young, I realised that most people don't intend to be mean when they ask questions or tell me they don't like my ear. They're just curious or commenting on their observations. Some of the people who said the most hurtful things were some of my good friends. I know they didn't mean to be hurtful, so I wasn't hurt. And my absolute closest friends, the people who I really connected with, always seemed to say the exact right thing that made me feel good about myself.
Every kid's experience is going to be different. But I'm willing to bet that every single kid with microtia is going to be asked: "What's wrong with your ear?" Some teasing (or something that approximates teasing) is likely, too.
For parents with babies with microtia, don't worry too much about it. Your kid will develop a thick skin. Your kid will learn to adjust. Your kid will find friends and activities that make him or her happy. Your kid will be fine. Or better than fine.
For all those kids out there, I know it can be tough to feel different. The greatest minds, the greatest inventors, the greatest athletes, the greatest leaders - they were all different. Your microtia is a gift. It opens you up to a world that is not available to people without microtia. You see and understand things that others don't. You can do anything you set your mind to. You can be successful at anything that makes you happy.
Here’s how I figure it…We live in a society where "looks" matter a lot. Tall people get comments about how tall they are. Redheads get comments on their hair. People with freckles get comments on their freckles. People with one skin tone or another get comments about their skin tone. A person with a big, little, flat, sharp, ski-tip or crooked nose get comments about that. Skinny kids (and the opposite) get comments about their BMI. We seem fixated on appearance...
So I got comments about my little ear.
p.s. Now people comment on how tall I am...
Sources: National Deaf Children's Society, Bone Conduction Hearing