A month ago I was in the post office with Grace. There were two sweet little boys and their dad; and as all children are, they were very interested in Grace. After asking a million questions about her, the older of the two turned to his dad and said, “look at her little ear.” The dad, completely mortified, tried to shovel his sons comment under the rug and hoped I didn’t hear. I took the opportunity to show off my daughter’s incredibly unique, special and adorable little ear to the first person who ever commented on it.
Grace was born with Microtia and mostly likely Atresia. Here’s a formal definition taken from The Ear Community:
Microtia is a congenital deformity affecting the outer ear (pinna) where the ear does not fully develop during the first trimester of pregnancy. A Microtia ear is often smaller in size, can have a peanut shaped appearance, only have a small nub or lobe present, or be completely absent at birth.
Atresia (also known as aural atresia) is the absence or closure of the external auditory ear canal.
We had no idea of this until Grace was born, and we’ve been learning more and more about what this will mean for our daughter and our family. Often times, Microtia is accompanied by other things – including kidney problems or nerve problems in the face. She, thankfully, seemly has no other “issues” accompanied with her little ear.
Grace recently had an extensive hearing test called an ABR. This ABR test determined that she has excellent hearing in her normal ear and a moderate hearing loss on her little ear. While she has no ear canal that we know of, she can still have a hearing aid on a headband that will vibrate on the bone behind her ear. Don’t ask me how it works, because I haven’t gotten that far in my research. Grace will get one of these in a month.
A sweet friend asked me how I felt about it… if I was upset that she had this. And the honest answer is yes. Yes, I’m upset that my child isn’t “perfect” (as if there’s such a thing). I’m upset that she has to grow up with a small ear and answer to stupid people who will make fun of her. I’m upset that she could potentially be behind her peers in speech. I’m upset that she needs a hearing aid. And I’m selfishly upset that I have to pay for all the doctors and equipment that will help Grace live a “normal” life.
Why couldn’t this happen to a family with excellent insurance? A family who didn’t have to pay a sick amount out-of-pocket for these doctors and hearing aids? [On a small side note…I’d love to smack those people who complain about paying a co-pay. Or who complain about paying whopping $1000 to have their child delivered at the hospital. Boohoo. I digress…]
Grace could have something much, much worse then a small ear. She’s beautiful and healthy with a blooming personality. She doesn’t have a life-threatening illness, nor a sickness where she will need to pump medicine into her body daily. She will live a normal, comfortable, blessed life (well, at least that’s the hope). So while it’s normal to feel disappointed about her small ear and feel frustrated that all my friends have babies with normal and perfect ears… I love my daughter’s unique, special and adorable ear. And Chris and I hope we can teach her to love it, too.