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“I Want You To Hear” How a local family shed some light on hearing loss in America

*This post is sponsored by Cochlear. All opinions are 100% my own.*

Living right here in Central Ohio is one of the coolest 12 year olds I’ve ever met. She is smart, witty, outgoing, loves to read, enjoys concerts with her friends, plays basketball, loves her family and friends, she is an advocate. She is deaf.

Elena and her family took the time out of their busy schedules a few weeks ago to spend a couple of hours with me and Luke to help shed some light on her hearing loss journey and how cochlear implants have completely transformed their lives.

To give you a brief overview of how we were connected with Elena, our oldest son Luke was diagnosed with moderate-severe hearing loss in his right ear last year. It’s been a very emotional rollercoaster for us as we navigate the unfamiliar territory of hearing loss– something we never anticipated, nor knew anything about.

The hearing impaired community is one we are just scratching the surface of, and Elena is the very first person we’ve met whose condition is somewhat similar to Luke.

However, Luke’s hearing loss is a little different than Elena’s. He was diagnosed at 5 years old, while Elena was diagnosed with profound hearing loss at just 4 months old. Luke has moderate-severe hearing loss in his right ear (we still don’t know how severe it is as he undergoes more testing next week), but Luke has complete hearing in his left ear. Elena is completely deaf in both ears. Luke wears a hearing aid to help him hear, and Elena has cochlear implants in both of her ears.

One thing both Luke and Elena have in common, they both come from hearing able parents, have zero trace of hearing impairment in their families and doctors are unsure why they have hearing loss. It’s a frustrating notion, but I’m quickly learning that’s the case for many children who are hearing impaired in America.

Here are some interesting insights about hearing loss in America:

  • According to the American Academy of Pediatrics, an estimated three in 1,000 infants are born in the U.S. each year with moderate, severe or profound hearing loss, resulting in delayed development in language, learning and speech. Hearing loss is the most common congenital condition in America.
  • According to the National Institute on Deafness and Other Communication Disorders, more than 90 percent of deaf children are born to hearing parents. This was really interesting to me. Since my son has hearing in one ear, I didn’t really think twice about how different his life could be up until this point if he had total hearing in both ears. My husband and I waited to get Luke his hearing aid because we were a little in the dark on how much of an impact it would make on his life. He has no speech impediment and excels at school, but the reality is, he is hearing impaired. However, Luke is not a candidate for a cochlear implant.

Let’s talk about cochlear implants. I’ve seen children with cochlear implants before, especially at the Nationwide Children’s Hospital ENT office where we have now spent some time. I really didn’t know anything about Cochlear until I met Elena.

Here is some background information about cochlear implants:

  • Cochlear implants have become the established treatment for children as young as 12 months with severe to profound sensorineural hearing loss.
  • Cochlear implants are designed to help a child develop speech, and research shows
    those implanted early in life have speech performance scores closest to scores of
    normal hearing children. ¹﹠²
  • While many early intervention factors contribute to a child succeeding with a cochlear implant, research and over two decades of experiences demonstrate cochlear implants provide improved speech and language development, quality of life and educational outcomes for children with hearing loss. ³ Like Elena!

It was truly remarkable to me to learn how being hearing impaired has not negatively impacted many aspects about Elena’s life. Her family has supported her since their doctor told her mother, Angie and father John, your daughter is deaf. Imagine their fear to hear these words when she was just 4 months old.

Like me, Angie went through a period of mourning the loss of her daughter’s hearing. But later on in her life, Elena received a cochlear implant after having a great ENT at Nationwide Children’s Hospital.

Elena then underwent intense speech therapy, sometimes 3-4 times a week. Her family’s
support and commitment to giving Elena the best quality of life has transformed this beautiful young lady into who she is today.

When I heard the words, “your son has hearing loss and he will likely need a hearing aid for the rest of his life” my first thoughts turned to the challenges he would face. How would this impact him mentally, socially, emotionally? Our ENT told us that hearing loss is oftentimes harder on the parents than it is on the child, but was that something doctors say to parents who sit stunned and watery eyed in their offices?

Chatting with Elena made me realize that having hearing loss is not really as scary as we can make it out to be, especially when there is technology like cochlear implants to help. She has had so many wonderful life experiences. She explained how kids in school ask questions about her cochlear implants, but then move on quickly… kids are inquisitive!

Elena showed us her cochlear implant sound processors and explained how much technology has changed even in the years she’s had them. She removed her sound processors for us to see and showed us how simple they were to put on and connect with the magnet she had surgically implanted when she was young.

Through technological advancements and improvements to the Cochlear™ Nucleus ® 7 Sound Processor’s connectivity with smartphones, she is now able to control the sound settings with the Nucleus Smart App on her phone. Amazing! Elena knows there will be many more advancements with Cochlear in her lifetime, and she’s really involved in the research and has truly become an advocate for herself.

If your child or someone you know has hearing loss, or if you’re like us and you may suspect your child has hearing loss, I really encourage you to do your homework now. Early intervention is proven to help a child’s chances of having the best quality of life, and Cochlear understands how overwhelming the hearing loss journey can be.

There are many helpful articles and resources on Cochlear’s website, which you can access here.

I am also a completely open book and would love to chat with you more about childhood
hearing loss.

You can also learn more at IWantYouToHear.com. 

Elena and her family opened my eyes to a community I didn’t even really know existed before last weekend. I can only hope to help another family who’s trying to navigate these unfamiliar territories the way Elena and her family are helping me.

Please seek advice from your health professional about treatments for hearing loss. Outcomes may vary, and your health professional will advise you about the factors which could affect your outcome. Always read the instructions for use. Not all products are available in all countries. Please contact your local Cochlear representative for product information. Views expressed are those of the individual. Consult your health professional to determine if you are a candidate for Cochlear technology.

¹ Hammes DM, Novak MA, Rotz LA, et al. Early identification and the cochlear implant: Critical
factors for spoken language development. Ann Otol Rhino Laryngol 2002;111:74-78.
² Tharpe AM, Gustafson S. Management of Children with Mild, Moderate, and Moderately
Severe Sensorineural Hearing Loss. Otolaryngol Clin North Am 2015 Sep 30
³ Novak MA, Firszt JB, Rotz LA, et al. Cochlear implants in infants and toddlers. Ann Otol Rhino Laryngol Suppl 2000;185:46-49.

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Luke, Elena and her brother Ryan

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Cochlear implant

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