Justin B’s Story

Justin Bays

Hello everyone! My name is Justin and I have Microtia/Atresia, Anotia, and have bilateral deafness. As I have had to learn over the years, these terms are defined as a malformed structure of the ear and Anotia is the absence of any form of the ear. I was born in Huntington, West Virginia in October of 1982 to two very healthy and loving parents. As one can imagine they were a bit surprised when I finally appeared. After being whisked away to a doctor to be checked out, concern then filled their minds. I was also found to have a facial deformity where the nerves on the right side of my face were not active thus making my face sag. Otherwise very healthy doctors told them that they would have to have me undergo tests (many of which that are around today were not available then) before coming up with a diagnosis.

A couple of years passed and my parents realized that I was not responding to sounds as they had thought I should, so I was taken back to an otolaryngologist for testing. At this time, I had begun to say some words as most toddlers begin to, the doctors were very surprised when my hearing test came back with a hearing level consistent with that of someone who was deaf. They decided to do the test again and the same result came back. My doctor looked at my parents and said there is no medical explanation to why this child can speak. I was then fitted with a bone conduction hearing band which I would wear for 22 years.

I grew up a fun loving, active child. My speech progressed as the average toddlers would and the bone conduction band brought my hearing up to a normal range. I was encouraged to play sports and tried everything from basketball to gymnastics to tennis which I would eventually play for an NCAA university. I was in all the typical classes and did not need much help because of my disability, just making sure I sat close to the front so I could hear my teacher the best. Having the appearance I did of course was hard when it came to kids (they can be very cruel at times) but I was very good at letting things go and realized that God was in control and made me like I am for a reason and His purpose. Today, I enjoy talking to and informing those curious people and maybe someway I can help them or someone they know.

As I stated earlier, I wore the bone condition aide for 22 years until I was introduced in 2003 to the new bone conduction implant surgery that Cochlear had begun doing consistently. I was implanted with the titanium screw and then fitted with the BAHA aid a couple months later. This was an amazing experience, the clarity and sound was so clear and much different than I had been used to. It took me a while to get used to it but today it is second nature to me and now I use the Ponto Pro from Oticon, who has also developed the bone conduction devices which are now digital and programmable.

I would like to close my story by assuring anyone out there with children who may be like me and encourage them that they’re child can live a “normal” life (normal is thrown around loosely these days) and live amongst people who may not have the same disability as them. I was able to attend public schools and play sports and now am married and my wife and I are trying to have children (my disorder is not hereditary and the chances of passing it along is slim to none)and I have a job that lets me use many of the talents the Lord has blessed me with. Family of Microtia/Atresia, Anotia and/or deaf children, do not lose heart, they will adapt to situations given to them, it is a daily struggle at times, but one that I, and they, will persevere through and I won’t let it get in my way!

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:16-18

Justin Bays – past Ear Community Board Member and father to a child that was also born with Microtia and Atresia