It's difficult to imagine your child has hearing loss. I thought the same thing. When Lexi wasn't given a newborn hearing screening (the accidentally skipped her), I thought nothing of it. The Pediatrician recognized it and she was tested at 10 weeks of age. Then again, when she failed that test and they said "she's just fussy, nothing to worry about", not a second thought. Yet again, on that same day when they said "bring her back in 6-9 months", I thought "Ok, sounds great." Even though now I know that was supposed to be a 2-4 week follow up according to the standard of care.
I thought nothing of any of it. There's no way I could have a child with hearing loss, much less deafness. So on we went!
Throughout the course of the next 6-9 months, it's crazy to me that I didn't recognize all of the warning signs. How could I not connect the dots as her mother? When I would sing to her every night, she would squirm, turn and cry. Losing my mom to breast cancer the previous year, all I wanted to do was sing her to sleep and connect with my first daughter, my mom's only granddaughter (whom she never met.)
But that connection didn't occur. I would cry.
Looking back, I still feel the guilt of those tears. Most of you reading this blog know how it turned out, but may not know these details of why my charity is called "Songs for Sound." It's not because the charity is headquartered in Music City, that's just a bonus. It's actually because in March of 2009, Lexi was finally diagnosed as being PROFOUNDLY deaf. She could not HEAR my lullaby.
What could have been diagnosed at birth, wasn't diagnosed until Lexi was nearly 14 months of age. In fact, when I went back into the pediatrician's office at around hear 1st birthday, my plea for the referral back to Audiology was met with resistance and the following statements:
Me: "She's not responding to loud noises."
Physician: "She heard the noise in the hallway."
Me. "She's not saying first words and this child has something to say."
Pediatrician: "Some children don't talk until they're 18 months of age."
A $300-ish follow up test was met with resistance...a lot of resistance. Finally, however, I walked out of that office with a referral.
Lexi was diagnosed as being profoundly deaf in both ears (bilateral deafness). I don't know why, how or when it exactly happened. What I do know is the entire time, there were amazing resources and answers just sitting there waiting for her. Lexi could have been implanted at 9 months of age, however, there was a GAP in "knowing something is wrong to getting her the help she needs." There was and still is a gap in connecting to an Audiologist, a gap in knowing what hearing loss and deafness even is, a gap in knowing what amazing technology is available and a gap in knowing how to afford it.
I made it my life's mission to close that gap for people all over the world. Even writing this, I'm inspired yet again to do something to help at least one person today.
Please take time to review our website and resources. We add resources constantly. We are HEAR to help anyone and everyone either hear again or keep their hearing healthy.
For any questions or if you have a family member, friend or YOU need help, START HERE.
1. Download a checklist HERE. (Super important!)
2. Study the statistics & our awareness info. (It CAN happen to you, your family member, your child!)
3. Call Your Insurance Company. Find out if you need a REFERRAL from your Primary Physician (or your child's Pediatrician).
4. If so, call and ask your Physician for a Referral to an Audiologist.
5. Make an Appointment with an Audiologist using our Partner's CLINIC FINDER.
After these steps, do not purchase anything until speaking with our CARE TEAM - Need help with hearing loss. Email Gina Bailey at gbailey@songsforsound.com to get started!
