A Late ID: Our Family’s Choices
By Amber McLaughlin, Nebraska H&V
Our story starts in Scottsbluff, a rural town in western Nebraska. Our daughter was born five weeks early. Baby Leah spent three more weeks in the NICU. The day before we were scheduled to take her home, she had her newborn hearing screen, and passed it. Her father and I didn’t think about her hearing again for about a year. Looking back, I remember a few instances when she was around six months old. I walked into the room she was in, saying her name and expecting her to turn towards me, but she didn’t. When she turned a year old, she only had three words, and again at her 15-month check-up, she had the same three spoken words: mama, baba (bottle) and dada. Our pediatrician referred us to a Speech-Language Pathologist.
The SLP told us after just one visit that Leah’s expressive language (though limited) was actually better than her receptive language, indicating a possible hearing loss. She referred us to the one and only audiologist in town, in fact, the only one in a 100-mile radius (welcome to rural western Nebraska). After a visit with him, my husband and I quickly realized he did not specialize in pediatrics, nor in our opinion, have the patience, skill or equipment to work with our then 18-month old daughter. We started looking elsewhere for audiology and ENT services.
The nearest city with the ability to perform a sedated ABR was Denver. We started making frequent trips to Children’s Hospital Colorado there, just over three hours away from our home. I’ll never forget the day of Leah’s first ABR. She was 19-months-old, and I was only worried about how Leah would handle the sedation that morning. I didn’t know how much our lives would change that day. I remember the audiologist pulled my husband and me into a narrow consultation room, and told us they had discovered that Leah had auditory neuropathy in her left ear and moderate to severe sensorineural hearing loss in her right ear. This was permanent, something Leah would deal with for the rest of her life. I am a Physical Therapist by day, so in that moment, the PT in me started asking all of the clinical questions possible, all while the heartbroken mother in me had tears pouring down my face at the same time. I grieved for the loss of my daughter’s hearing for years in private, but never showed that sadness to her. I have always done everything I can to show Leah that her hearing loss will not hold her back, that she can not lean on her disability as a crutch in life, and that there isn’t anything she can’t do in life, despite her hearing loss.
After getting her diagnosis, my husband and I wanted to move to a city that had more resources for families going through what we were going through, a city with a Children’s Hospital, and a city with more kids with hearing loss that Leah could grow up with, so she didn’t feel alone. We chose to move to Omaha, after falling in love with the support and services at Boys Town National Research Hospital. Shortly after moving to Omaha, I got involved with Nebraska Hands & Voices. We didn’t have a GBYS program in Nebraska yet, and I’m sad that we didn’t get to participate in that program. We currently have an amazing GBYS program here with an awesome coordinator. About six years ago, I joined the Nebraska H&V board, becoming Secretary two years in and voted into the President position two years ago. I’m so thankful that we have such a strong H&V program in Nebraska and such supportive families. I learned later that the American Speech and Hearing Association (ASHA) supports children having their hearing screened before beginning services, as a hearing screen pass at birth is not a pass for life. I have learned more since then.
Beginning Advocacy
In 2018, Leah and I traveled to the state capital in Lincoln, to testify for our hearing aid bill, LB15. This bill would require all medical insurance companies in Nebraska to cover the cost of hearing aids for children ages 0-19. Like a majority of states, insurance companies in Nebraska did not have to pay for hearing aids for kids. We had already shelled out thousands of dollars for four different hearing aids in Leah’s life up to that point. I loved introducing Leah to the judicial process that day, and several months later we celebrated when the bill passed and became a law.
She has had some other adventures as a junior advocate. Leah met the governor of Nebraska when he spoke at a Town Hall meeting at the University of Nebraska-Omaha focused on the Deaf and Hard of Hearing community in the state. She also met Deaf actress Marlee Matlin in person in Omaha. They got their picture together in the newspaper. I’ve always worked hard to show Leah that her hearing loss is nothing to be ashamed of and that there really isn’t anything she can’t do just because she doesn’t hear the way most of the world does.
Change of Plans
About 18 months ago, when Leah was ten, we learned that auditory neuropathy was a misdiagnosis. We made the tough decision to go ahead with a cochlear implant for her left ear. While the surgery was a success, we haven’t had a great outcome with the CI yet. Since Leah was so old when she had the surgery, her brain was too used to not getting any input through her left vestibulocochlear nerve. We are now 9 months post-surgery, and she has really struggled with wearing the CI. I’m afraid a lot of her lack of wearing it is unfortunately due to COVID. With her surgery happening in early February, 2020, and her activation just a few weeks later, we were only able to get one in-person therapy appointment in before the world shut down. Since then, Leah has only worn her CI a handful of times, mostly during Zoom sessions with her deaf educator. COVID and masks and distance learning has been such a struggle for Leah. She relies so much on lip reading to aid in her ability to understand what is being said. We do supplement with SEE (Signing Exact English), but we have not yet been successful with our request for sign support at school. We do own several masks with the clear shield front, but we struggle with having them with us at the right time, and of course, fog. But we’ll forge on, continuing to fight for equal access to language, education, and communication. Lucky for all of us, Leah is a bright, outgoing, and happy child. The world is her oyster, and she will accomplish big things. This journey has taught me so much, and I am so proud to be her mother. ~
H&V Communicator – Winter 2021