When Kelsey M. gave birth to Hadlee June, she never expected her daughter would have hearing loss. When tests came back that Hadlee had severe to profound hearing loss, Kelsey was devastated. Hadlee was the first in their family born deaf, and Kelsey could not imagine a world where her daughter could not hear her say, “I love you.” Luckily, cochlear implants were the solution for Hadlee. Check out the story of Hadlee’s amazing hearing journey:
“Our story is similar to so many other hearing parents with children who have hearing loss. I gave birth to our very first baby, a girl we named Hadlee June. She was healthy and happy, but when she was only 6 weeks old, our world was turned upside down when we were told she was deaf.
Hadlee failed two hearing tests in the hospital and nurses explained it was most likely due to fluid in her ears, but just to be safe we scheduled an auditory brainstem response test with an audiologist that would determine whether it was fluid or something else. I remember almost canceling the appointment because I was so sure Hadlee could hear. There was no family history of hearing loss, other than old age, and I would constantly tally up times I thought for sure she had heard. Like the reason she stopped crying was because I picked her up and she heard me whisper, ‘shhh.’ Or the reason she woke up in the car seat was because she heard the door slam. I went to the appointment for peace of mind, and the audiologist said the words I never let myself think even in my darkest fears, ‘Your daughter is deaf.’
Hadlee was diagnosed with severe to profound sensorineural hearing loss at 6 weeks old. She is the first deaf person I had ever met. I naively felt such a loss, and I grieved for a long time. It sounds silly, as I did not lose my daughter, but I did lose the vision of how I pictured her life would play out. The future was so uncertain; how would she communicate, would she be able to attend school, would she ever hear me tell her ‘I love you?’
Eager for a solution for Hadlee
We were referred to the local children’s hospital where we were told that Hadlee would most likely be set on a path that led to cochlear implants. Her hearing loss was more profound than severe, and hearing aids would most likely not help her enough to be able to hear or speak. I had never heard of cochlear implants before, so we did thorough research before deciding this was the path we wanted to take. We wanted our daughter to hear, speak and have all of the opportunities we could give her. We also thought about the safety issue, as we wanted Hadlee to be able to hear a car coming or hear any other danger approaching.
We had to wait to implant Hadlee until she was a year old, so Hadlee started wearing hearing aids at 3 months and received a bit of hearing from them, but not enough that it would be easy for her to speak. Around this time, she also started seeing a speech therapist and eventually a teacher of the deaf; both of whom helped my husband and I teach Hadlee sign language while she was learning to listen. My husband and I also joined a local support group of parents who have children with hearing loss; most of the kids in the group had cochlear implants or hearing aids. It was incredible to see other kids who had hearing loss like our daughter but, unless you knew, would never be able to tell they were deaf because of how well they spoke and listened!
Recently we also went through genetic testing for Hadlee to see if we could find a cause for her deafness, and the geneticists found a gene variance that implicates that Hadlee has Waardenburg syndrome type 2 (WS2). We found out that this gene mutation was not from either parent and was a completely new mutation that occurred when she was conceived. This happens in 1-2% of the people meaning Hadlee essentially ‘won’ the gene lottery. People with Waardenburg syndrome type 2 often have hearing loss along with other defining characteristics such as abnormal coloring of eyes, hair or skin. Hadlee got her hearing loss from WS2, as well as two beautiful eyes that are different colors! Her right eye is green, while her left is blue.
Choosing Cochlear
That first year of Hadlee’s life flew by in a flurry of specialist appointments, tests to see if she was a candidate for cochlear implants, therapies and sign language classes, all while we were learning to be the best parents we could be for our daughter. When we finally got the news that Hadlee was approved for cochlear implants, we were ecstatic.
We were given options of different brands and chose the Cochlear™ Nucleus® 6 Sound Processor. We loved that Cochlear had been around the longest and therefore had some of the best technology. We also loved the look of the processor and the fact that the battery was wireless and did not need to be attached to her shirt or anything. We really liked the many accessories it came with too, especially the Nucleus Aqua+* because Hadlee loves the water. The final thing that sold us on Cochlear was their reputation. Almost all of the children in our support group use Cochlear as well, so we trusted their opinion.
Hadlee was implanted just six days after her first birthday and had her new ‘ears’ turned on three weeks later. For the first time, we knew without a doubt that she could hear our voices. She responded to things I have never seen her acknowledge before; like the sound of a bird chirping or a car going past our home. Within the first month, she was hearing at 30 decibels in the sound booth, better than she had ever heard with hearing aids! And eight weeks after she got her Cochlear Implants turned on, she started saying words like ‘uh-oh,’ ‘ball’ and ‘mama!’ Hearing her speak and watching her listen to new sounds was the most exciting thing we could experience.
Developing language and speech
Language and speech seemed to come so easily and natural to Hadlee, now that she had her special ‘ears.’ She loved to listen and speak and would ask for her ears in the morning and tell us when they would fall off so we would put them back on for her. She did not want to miss a minute of listening to what was going on around her. The beginning was anything but easy; we had to constantly be aware of sounds around us that we take for granted, like the heat turning on or the sound of our cat’s bell, so we could point it out to Hadlee and explain what it was, as she had never heard it before. It took a lot of time and practice to learn how to teach her how to hear, but we worked at it and eventually it paid off!
Today Hadlee is 2 years old and now hearing around 20 decibels with her Cochlear Implants on, putting her in normal hearing range! She is an extremely bright and happy toddler who has a love of books, swimming (and she can hear us in the water now thanks to the Aqua+), drawing and all of your typical toddler activities. She is very social with other children and adults and is a constant chatterbox.
Hadlee exceeding expectations
We recently went through some government testing at our hospital to see where Hadlee falls with speech and development in comparison to her hearing peers, and Hadlee not only tested on par, but above average! She has exceeded the speech therapist, audiologist, surgeon and so many others’ expectations of how she should be doing after only hearing for a year! Finding out how Hadlee is doing brought tears to my eyes.
I look back on when we first found out that our daughter is deaf: all of the fears, confusion and questioning what her life would look like…I am thankful every day that this technology exists. It has quite literally changed my daughter’s life and has made hearing a possibility, going to a mainstream school a possibility, speaking a possibility and countless other opportunities that would not be as likely if she did not have the gift of hearing. At the beginning of Hadlee’s life I would have said our goals included her being able to hear and speak, things most people take for granted. Now there is no limit to what Hadlee can achieve. I truly believe she has the ability to do anything she wants in this life and that is the greatest thing a parent can ask for their child.”
Is your child newly diagnosed with hearing loss? Are you eager for them to hear and speak? Visit IWantYouToHear.com for more information and next steps.
* The Nucleus Aqua+ accessory is IP68 rated and is approved for use with rechargeable batteries and is not approved for use with the acoustic component. The Nucleus 6 Sound Processor is water-resistant without the Nucleus Aqua+ accessory to level of IP57 of the International Standard IEC60529 when used with rechargeable batteries.
