The Unexpected by Katelyn Lynch
I’m the type of person who plays it safe. I’m not a risk-taker and prefer my feet planted on the ground. You won’t find me sky diving or riding a motorcycle and the thought of heights makes me nauseated. During my pregnancies, I took every precaution and went by every APA recommendation for prenatal care. Even when you do every single thing right the unexpected happens and that’s just the way life works.
After an uncomplicated and healthy pregnancy, I gave birth to my second son Travis on April 1st, 2018. The moment the nurse put him on my chest is when everything changed. Travis was born without external ears. I looked down at my sweet baby boy feeling so relieved to have him safely in my arms only to be struck with a moment of complete shock, fear, and confusion. The doctor and nurses didn’t know what to say. None of them had ever seen this before. I remember the room looking like a hologram, like this couldn’t possibly be real. I was so overwhelmed. Would he ever hear my voice? Was he deaf? Why did this happen? There were so many unknowns. We had to do some googling at the hospital and finally, we had a diagnosis. Bilateral Microtia Atresia.
Over the next few months, Travis had countless doctor appointments to rule out other conditions that are commonly associated with Microtia. The condition is very rare and there is so much we still don’t know about how or why it happens. We were very lucky to find out that Travis has no underlying medical issues or genetic syndromes and we are so extremely grateful for that. He had an Auditory Brainstem Response (ABR) test done at an audiologist and confirmed that his inner ear was normal and that he would be able to hear at a normal level with the help of a hearing aid.
He received his first bone-anchored hearing aid (BAHA) at 6 weeks old and has been wearing it every day since. The device is connected to a headband that Travis wears around his head. The sound processor vibrates the skull stimulating the cochlea so he is able to hear. My hope is to bring awareness to Microtia and BAHA devices and also show inclusion for people with differences. I want to be an advocate for my son and this community he was born into by fighting for the rights of the hard of hearing community. One of the more shocking things we learned during this process is that these hearing devices are not covered by insurance companies. We were lucky that our insurance billed my son’s hearing aid as medical equipment and after an appeal we got it covered at 90%. Even at this rate, the out of pocket amount was $1000. What about the families that are unable to afford these life-changing devices? The access to sound should not be limited to only those that can afford it. I want to help change that.
Melissa Tumblin, the founder of earcommunity.org has a daughter named Ally who was born with one-sided microtia. In December 2019 she started a national level bill called Ally’s Act H.R. 5485 which, if passed, would ensure that these hearing devices as well as cochlear implants are covered by insurance companies. There are thousands of children born with varying types of hearing loss and many of them cannot afford the access to sound. This bill cannot be passed without help! To help get this passed, please log on to seasonthelayers.com or earcommunity.org and follow the links for Ally’s Act. By just sending your local congressman a letter you can help get this bill passed!
Having a child with a rare birth defect is isolating. The first year of his life I was so ashamed. Not of my son, but ashamed of myself. I felt like my body had failed me. The blame I put on myself was heavy and I couldn’t bear that weight anymore. On top of all of that, I was going through the normal post-partum emotions and changes every mom goes through and finding the balance from going from one child to two. I needed to find a community of people that understood what I was going through. I am extremely grateful for this connected world we live in and the social platforms that exist. Facebook was an amazing tool and there were a few groups I was able to join with children and adults born just like my sweet boy!
If you are the parent of a child born with differences, know that you are not alone. Use whatever platform you can to find a tribe of people that can be there for you. Share your story with others if it helps. Be an advocate for your child and know that you were meant to raise this child.
Travis changed me in ways I never knew were possible. He is a happy, active toddler with no fear, he loves his older brother, he loves music and dancing, he has a great sense of humor and he loves exploring the outdoors and observing this great big world. I’m so grateful to be his mom and I will fight for him and others like him with intention and purpose.
To keep up with our story please follow @SeasonTheLayers