Diaries

Sharing My Biggest Secret | Part 1

Last week I had my third reconstructive ear surgery and implanted part of a bone conduction hearing aid behind my left ear. Most of you who know me probably don’t know this about me: I was born with unilateral microtia and aural atresia. It’s a congenital deformity that only occurs in 1 out of every 5,000 to 7,000 births (though rates vary depending on ethnic background).

I have never openly shared this to the public, especially to the Internet, until now. With this huge recent change in my life and being the most comfortable in my own skin that I have ever been, I’m ready to share this part of me that I’ve kept to myself.

First off, let me explain what microtia is. It’s a congenital deformity of the outer ear where the ear does not fully develop. They vary in appearance which can be categorized by grades. It can affect one ear (unilaterally) or both ears (bilaterally). The right ear is more commonly affected and microtia is more commonly found in males. People with microtia are often associated with aural or canal atresia (an absence of an ear canal) or canal stenosis (an extremely narrow ear canal). The ear canal is the opening of your ear and how sound travels into your inner ear.

The four grades of microtia:

Source: https://med.stanford.edu/ohns/healthcare/earinstitute/health-info/conditions/microtia.html
  • Grade 1: The ear is smaller than normal but the key features of the normal ear are present
  • Grade 2: sometimes called “conchal type microtia”, and usually much of the lower two-thirds of the ear is still present. The ear canal may be present, but frequently is very narrow (canal stenosis).
  • Grade 3: sometimes called “lobular type microtia.” This is the most common type of microtia, in which the only feature remaining is a small peanut-shaped remnant ear lobe. The ear canal is usually completely absent (aural atresia).
  • Grade 4: Complete absence of the external ear without any remnant. This is called “anotia”, and is rarely seen.

(source)

According to Stanford Children’s Health website, microtia is not genetically inherited. In majority of the cases, microtia appears to be a randomly occurring event or anomaly that happens during early development of the embryo.

I was born with grade 3 microtia, the most common type. Grade 3 microtia comes with atresia which means I don’t have an ear canal. Because of this I have conductive hearing loss. This hearing loss occurs when there is a problem conducting sound waves anywhere along the route through the outer ear into the inner ear. So people with grade 1 and 2 microtia usually don’t have conductive hearing loss.

Before I start to explain the reasoning behind my decision to get a hearing aid at the age of 25, let’s start from the beginning. I want to share some notable stories growing up with microtia that greatly impacted my life and shaped the way that I am today.

My first real memory about my hearing loss was when I was about four or five years old. One day my right ear clogged up and I couldn’t really hear. It’s like when you get water clogged in your ears. I remember telling my parents that I couldn’t hear properly. I would ask them to repeat themselves a lot and they would get impatient with me. Eventually my ear cleared up and I could hear clearly again.

I never realized how different my ear was until around third grade. I remember always having my hair tied up in a low pony tail. It was my favorite hairstyle to wear because it wouldn’t get in my face and I could play freely during recess. But one day during class, I saw some kids whispering behind their back, staring and pointing at me. In that moment, I could feel my self-esteem wither away and I wanted to cry. From then on, I never wore my hair up unless I had to.

Microtia was something very personal to me that I didn’t share with anybody because I thought people would stop being my friend or think I’m weird. Even with my closest friends, I didn’t tell them until many years down the road after I had known them for a long time.

The first time my parents mentioned the possibility of reconstructive surgery to essentially create an outer ear for me, I was ecstatic. Up until this point, I just wanted to be like everyone else and have a normal looking ear. We looked into it and found a doctor in Taiwan that specialized in reconstructive ear surgery. I don’t remember the decision making process that led to me having surgery at the young age of 11, but by the time I was 12 I had two rib graft surgeries to create a new ear for me.

The reason I am sharing all of this today is because after doing a bit of research online and trying to find people like me who have gone through similar experiences, I realized there wasn’t much out there. There are scholarly articles and facts about microtia but very little about personal experiences people went through that I could relate to. I hope that by sharing my experiences, kids or even adults can find comfort in knowing they’re not alone and also educate those who aren’t familiar with microtia.

This will be a short series about my journey to self-acceptance and hearing on both sides! The next part will be about my experience going through the first two surgeries and how my life progressed in high school and college. I hope you join me on this journey!

xo
Annie

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