Deanna S. looks back on learning about her daughter, Shelby’s, auditory neuropathy spectrum disorder and hearing loss diagnosis and her progress since receiving cochlear implants. Now with a large vocabulary and a love of music, see how Shelby is doing today:

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“Shelby was born quickly but with no complications on November 7, 2017. She was beautiful and perfect. The day after she was born, she did not pass her newborn hearing screening. My husband and I were not worried, as we were confident it was just fluid in her ears, since she was born so quickly. Two weeks later, at a follow-up appointment, it was confirmed she had hearing loss.

After additional testing at 3 months of age, my baby was diagnosed with auditory neuropathy spectrum disorder, and we were referred to a cochlear implant surgeon. Shelby had a follow-up Auditory Brainstem Response Test (ABR) and MRI. Shelby could hear some things, but not well and not consistently. She heard a lot of ‘static.’ Hearing aids would only amplify this static, so cochlear implants were recommended if we wanted her to develop speech. That was our goal, so we made the appointment for surgery, the day after her first birthday.

Deciding on a cochlear implant brand

Child with auditory neuropathy spectrum disorder with her Kanso Sound ProcessorsThe next step was to decide which brand of cochlear implant we wanted for Shelby. We met with all three of the reps! All during this time, I did a lot of research, read everything I could on the cochlear implant companies’ websites, and researched on social groups of parents who have gone through the same decision process that we were going through. I also wanted to be sure this was the best option for Shelby and called the audiologist multiple times to make SURE everything I read in her ABR report meant Shelby would have the best shot with cochlear implants.

The day came when we needed to give our audiologist our decision. We let her give her thoughts on each company and we then talked to our surgeon. We eventually went with Cochlear because we really liked the Cochlear™ Kanso® Sound Processor and the Nucleus® 7 Sound Processor. We wanted an ‘all-in-one’ sound processor that would be inconspicuous. We also liked the Aqua+ kit1, other accessories and iPhone®23 direct streaming.

On Shelby’s birthday, the day before her surgery, the hospital called me to tell me her surgery had been cancelled. There was an issue with the operating equipment, and they could not reschedule at that time. I was devastated and I cried. I called my husband, who is calm in every situation, who let me know it would all be okay. Our amazing surgeon offered to work the following Saturday and assembled an all-star crew to perform the make-up surgeries from the missed day.

The day of Shelby’s cochlear implant surgery

Child with auditory neuropathy spectrum disorder playingThe day of surgery, my husband and I sat in the waiting room, watching tv, looking at our phones and people watching. Finally, our surgeon came out and told us everything went well. He showed us pictures of the surgery with a big smile on his face. We took Shelby home shortly after she woke up from surgery. She slept most of that day and was back to her normal, happy, playing self the next day. Her ears stuck out a little bit and I was worried that would be permanent, but it wasn’t. Weeks later, we went back for activation. Shelby hated it. She screamed and cried. At one point, the audiologist clapped, and Shelby whipped her head to look at her. That was our moment when we knew they were working, and everything would be ok.

In the beginning, we tried both sets of sound processors. The Kanso Sound Processors worked better for our family, because we found them easy to put back on when they fell off and Shelby did not mess with them. She has amazing wear-time. About six months after activation, we had a pool installed at our house. Eventually, it became quick and easy to put the Nucleus 7 Sound Processors and Aqua+ Kit on Shelby. She wears a mesh pilot cap to help keep them secured, and she uses clips that attached her sound processors to the back of her shirt. She loves playing in the water, and we love how she can hear us while she’s with us in the pool.

Shelby’s hearing progress

Child with auditory neuropathy spectrum disorder at a sporting eventAfter activation, it was no time at all before we noticed Shelby turning to sounds. She had always babbled a lot, and this continued. Those babbles soon turned into words. We started Auditory Verbal Therapy with an amazing therapist shortly after Shelby’s activation. Shelby and I went to AVT once a week for an hour.

The other days of the week, I sat Shelby in her highchair for 15-30 minutes a day and performed the same exercises as recommended by our therapist. Shelby loves therapy! She quickly met her goals and started saying many words. Her therapist was thrilled with her progress. When Shelby was 19 months old, her expressive hearing tested at 19 months and her receptive hearing tested at 20 months. She had caught up to her hearing peers!

With mixed emotions, we were discharged from AVT. Shelby is now 23 months old and has well over 100 words in her vocabulary. She can speak 2-3 word sentences and has something new to say every day. I found car rides to be great opportunities to sing to Shelby. I’ve never been much of a singer, but it came naturally to me to turn the radio on and sing, sing, sing. To and from daycare every day, and everywhere else we go together, I sing to her. It was no time at all before she started singing with me. It’s now my favorite time of the day, taking her to daycare and hearing her sing with me in the car.

Shelby’s love of music

Child with auditory neuropathy spectrum disorder dancingWhen we first heard Shelby had hearing loss, my husband was very concerned she would never be able to hear music. We listen to music and watch music videos a lot in our house, and it’s a big part of our everyday life. Now, every time we play music, Shelby runs to the sound and starts dancing. No matter what the song is, she loves listening to music and dancing.

Shelby is outgoing and by far the most social person in our family. She makes friends wherever she goes! She LOVES to say bye-bye whenever we leave anywhere. She is happy, loving and loves to give hugs, high-fives and fist bumps. She does everything her 3-year-old big brother does. Cochlear implants were the best decision we could have made for Shelby. She is doing amazing, and I’m looking forward to seeing everything she’ll do in her future, thanks to her cochlear implants.”

Was your child born with auditory neuropathy spectrum disorder? Learn how cochlear implants could open up their world of sound.

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  1. The Nucleus 7 Sound Processor with Aqua+ is water resistant to level IP68 of the International Standard IEC60529. This water protection rating means that the sound processor with the Aqua+ can be continuously submerged under water to a depth of 3 m (9 ft and 9 in) for up to 2 hours. This water protection only applies when you use a Cochlear Standard Rechargeable Battery Module or Cochlear Compact Rechargeable Battery Module. The Nucleus Aqua+ for Kanso is IP68 rated and approved for use with alkaline and nickel metal hydride batteries. The Nucleus Kanso Sound Processor is water-resistant without the Nucleus Aqua+ for Kanso accessory to level IP54 of the International Standard IEC60529
  2. For sound processor compatibility information, visit https://www.cochlear.com/compatibility.
  3. iPhone is a trademark of Apple Inc., registered in the U.S. and other countries
  4. The cochlear implant system is intended for use in children 9 to 24 months of age who have bilateral profound sensorineural deafness and demonstrate limited benefit from appropriate binaural hearing aids.
Cara Lippitt
Cara Lippitt is the Public Relations and Marketing Manager at Cochlear Americas. She is responsible for consumer marketing social media and blog content. Cara is inspired by the stories of the recipients that she is able to tell and the incredible journeys they have taken. Cara was born and raised in Colorado and adores the mountains, snow and the world of musical theatre.