Falling Through the Cracks
“I will never forget those two phone calls because those were the moments when I realized that I was not alone, and neither was Ally.”
I remember the day when my youngest daughter Alyssa (Ally) was born. It was one of the happiest moments in my life. My husband, Brent, and I were so thrilled to finally meet her. I remember her little smile and how beautiful she was, but I also remember Brent coming over to me with tears welled up in his eyes when he said “Something is wrong with her ear.” Ally's right ear was only partially formed, with no obvious ear canal. Immediately, I began blaming myself wondering what I had done wrong during my pregnancy and trying to remember if I had ate or drank something that could have caused this. No one said anything to us about Ally's ear in the operating room, and so of course we became concerned. Brent went home that night and researched what it could be that Ally may have. That night he told me that she may have what is called Microtia. Our pediatrician verified this the next morning in the hospital.
Soon after meeting with an audiologist, tests confirmed that Ally had a functional hearing mechanism in her right ear, but at a severely reduced level due to no ear canal. Also, after meeting with a children's ENT specialist we learned that Ally had both Microtia and Atresia (the absence of an ear canal). We were told that she would be just fine with one ear and to bring her back in one year as there was nothing that we could for her now. So, with this information we went home somewhat happy and relieved.
Ally, an “American cutie”
As the months passed and my feelings of sadness and remorse about Ally's ear began to subside, I decided to do some more research on Microtia and Atresia. During my research I stumbled onto a couple of support groups for Microtia. I began reading about children wearing BAHAs (Bone Anchored Hearing Aids) and having speech therapists for helping correct speech and communication delays that have resulted from unilateral hearing loss. I also learned about helpful organizations and resources that can help provide these types of services and information. I found out that many families either received calls about these resources, or were educated about them while in the hospital. This is when I realized we had fallen through the cracks. In frustration, I made a handful of calls reaching out to some audiology professionals and luckily came across Cheryl DeConde Johnson and Linda Cox (audiologists). Both Cheryl and Linda not only helped educate me on hearing loss issues but they also helped me become a better advocate for Ally. Shortly after, I received two phone calls from Lyn Bopp and Chresta Brinkman of the Hands & Voices Guide By Your Side program. I cannot tell you how nice it was to receive a call from someone who also had a child with Microtia and what a relief it was to be able to speak with someone who was in the same situation in which my own family was. I will never forget those two phone calls because those were the moments when I realized that I was not alone, and neither was Ally. All three of us were able to have conversations that we would have never been able to have with our children's doctors.
Since then, I now know that there are helpful organizations and resources for our families and our children, such as the Hands & Voices organization and early intervention programs. I have learned that we need to do our research in addition to what the experts may suggest to us. Sometimes, we may need to seek a second or even a third opinion when trying to find a doctor who is the best fit for both us and our children. I've also discovered that in some situations, doctors and surgeons may not have all of the information related to Microtia and Atresia and that passing along information can be beneficial in helping to update them.
I will never forget the feeling of being lost, alone, and not having anyone to talk to or share experiences with when Ally was born. Finding a support group or community can be invaluable in learning to accept and embrace Microtia. We can learn from other parent's experiences to help raise our children with plenty of self confidence. I remember seeing the movie “Finding Nemo” before Ally was born. Even though Nemo had a “lucky” fin, he was happy and well accepted by the other fish. Nemo's small fin added to his personality, and a small ear or a crooked smile can also add to a person’s personality.
In hopes of bringing those with Microtia and Atresia together, I have created a global support group on Facebook to help promote education, increase parent advocacy, and help other families realize that they are not alone. The support group is called The Microtia and Atresia Support Group and includes everything from a warm and supportive community to a discussion board full of informative research, reconstructive options, a photo album and so much more. I even have information on where to find eye glasses for those having Microtia. The Microtia and Atresia Support Group is a global group with members from all over the world. The group can be accessed at the following link: http://www.facebook.com/pages/Microtia-and-Atresia-Support-Group/118851728152174?v=wall.