Our Story with Hearing Loss
On June 19, 2016 our lives were forever changed by the birth of our son Maxwell James Click. We had a normal pregnancy, and a normal (but painful) birth. While I have always been one to worry about every little thing, one thing that never even entered my mind was the possibility of a hearing loss. That is until the day we were leaving the hospital.
Our first hearing test was administered the day after Max was born. Although we received a “refer” in both ears, we were told not to worry as many newborns often have fluid in the ears. The day we were leaving the hospital, Max had another test that he did not pass which lead to scheduling an appointment at The Kentucky Commission for Children with Special Needs two weeks later.
The next two weeks consisted of adjusting to parenthood with the looming fear in our minds that maybe our child isn’t “normal” or “perfect”. We walked around the house clapping our hands, or slamming things shut to watch our son startle. By his reactions to the noise we convinced ourselves that he was fine. We are two healthy adults and were sure that this “wouldn’t happen to us”.
What followed were two ABRs at the Commission which lead to a mild-moderate hearing loss diagnosis in both ears. We didn’t even know that this was a concern until we were educated on the development of speech and how to give Max access to sound.
The next few months consistened of various testing and appointments. Max was aided at 3 months old and we began weekly speech therapy sessions around the same time. Since hearing loss can be associated with other things, Max was then refered to see an opthamologist, a cardiologist for an EKG and to be monitored by a Developmential Interventionist bi-monthly. Through genetic testing we learned that Max's loss is due to Connexin 26, a protein found on the (GJB2) gene and is the most common cause of congenital sensorineural hearing loss. Connexin 26 mutations are responsible for at least 20% of all genetic hearing loss and 10% of all childhood hearing loss.
We see an ENT regularly and test Max's hearing every 6 months. While we can't predict the future, at this point the severity of his loss is not progressive and he doesn't have any other genetic issues or problems with development. Aside from the extra accessory on his ears, he is a perfectly happy, normal little boy.
As a new mom, the appointments and uncertainly of what Max’s “new normal” would be was emotionally draning at first. However, we were lucky enough to find a community within Lexington Hearing and Speech and other organizations like them. The support and warm welcome we have been shown by LHSC, First Steps and the Kentucky Commission has meant more to us than anyone can ever know. They have provided information to us, helped us manage Max's new routine, and more than anything helped us realize that hearing loss is but a minor bump in Max's long road ahead.
Max is now 14 months old. He is healthy and an absolute joy to be around. To him, putting in his hearing aids everyday is just the same as putting on his shoes, it's just part of his routine. I am pleased to say that we have become educated about hearing loss and try to do all we can for organizations like HLAA, Lexington Hearing and Speech and others that support families like ours in various ways. Max and I are proud to walk in the Walk4Hearing event in Louisville in November. We hope that in some small way we can help the oganization meet their goals of removing the stigma of hearing loss as well as providing information and support for those that live with hearing loss every day on any scale, whether it be a moderate or a severe loss. Thank you all for your support!
The Hearing Loss Association of America (HLAA) Walk4Hearing increases awareness about hearing loss, helps to eradicate the stigma associated with it and raises funds to provide information and support for people with hearing loss. Since 2006, the Walk4Hearing has raised more than $12 million and has become the largest walk for hearing loss taking place in cities across the United States.
We walk because hearing loss is a public health issue third in line after heart disease and arthritis.
- Approximately 48 million Americans have some form of hearing loss
- More than 30 million Americans are exposed to dangerous levels of noise in their workplaces
- An estimated 1 in 5 American teens experiences some degree of hearing loss
- 2.3 million Veterans receive either disability compensation for service-connected hearing disabilities or are in treatment for related hearing issues
Hearing loss affects one's ability to communicate every day in different situations - from a dinner conversation at a noisy restaurant, on the phone, to not hearing alarm clocks and smoke alarms. For people with hearing loss, these situations can be become obstacles without the right information and support. HLAA provides the assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss.
For more information about HLAA, please visit www.hearingloss.org.