Multiple failed newborn hearing screenings were disheartening for Jack’s parents. After a diagnosis of sensorineural hearing loss and single-sided deafness, it was a massive relief that they had multiple hearing health professionals to recommend the best options for their child. Read more below about the challenges, determination and unwavering love that Jack’s parents provided in their search for a hearing solution and how it led them to a cochlear implant:
“Hello! I am the proud mama to two of the sweetest children. I wanted to share my son Jack’s story. Jack, who recently turned 6, was diagnosed at birth with sensorineural hearing loss in his right ear (he doesn’t have the little hairs that vibrate to make sound for the brain to process and make sense of the sounds). He has profound hearing loss and cannot hear anything in that ear.
Jack was born in Wyoming, in a very small town of less than 3,500 people. The day he was born, he failed the newborn hearing screening. I was told it can be common and that they tested a little early and they would just retest in the morning after the 24-hour mark.
Well, the 24 hours mark passed, and the nurses took him back to redo the test. I was a very impatient mama who wanted my sweet baby back in my arms and was anxiously waiting to be told he passed. Much to my dismay, the nurse came back and said he had failed it again. They told me he may have some fluid in his ear causing him to not hear, and not to worry, we would try again in a week. I came back a week later, this time they allowed me to go back to the testing room, and my sweet boy failed the hearing test again. I was referred to an audiologist, an hour away and still encouraged that it may be fluid.
Hearing loss diagnosis and next steps
After waiting a month to meet with the audiologist, the day finally came to find out what was going on with my son’s hearing. She informed us he had profound hearing loss on his right side. Every parent wants the very best for their child. To look down at my sweet newborn and be so uncertain what this meant for him and how this would impact him was overwhelming. No parent wants their child to have to work harder or struggle.
Our audiologist was absolutely amazing, and I truly believe everything happens for a reason. She was very encouraging and optimistic—she shared her story about a family member, who had the same diagnosis as Jack. This was in 2019 and aiding or doing anything for people with SSD (single-sided deafness1) was almost unheard of. The thought process was: at least they have one good ear and can still hear. This line has grown to be my absolute least favorite thing to be told.
Jack’s audiologist shared a small part of her family members success with a cochlear implant and encouraged us to look into it for Jack. She gave us her family members audiologist and surgeons name and we immediately made an appointment to gather more information. We also started early intervention and speech in home when he was 6 weeks old.
Three months later, which felt like a lifetime due to the uncertainty, our first appointment with a local otolaryngologist occurred—he was so calm and informative. Before we left, my husband and I asked him, ‘what would you do if this was your child?’ He elaborated on the research and studies with the importance of having two ears to localize and said without hesitation he would absolutely proceed with a cochlear implant.
Jack would need a CT scan to determine if he would even be a future candidate for a cochlear implant, as he would have to have a properly formed inner ear and auditory nerve. Still not convinced that we were going to go that route, we scheduled the CT scan for when Jack was 6 months old.
I’m stopping to intervene for a moment…during all of this time, all day every day, I had to think about how I held him so that his left ‘good’ ear was closest to my mouth so he could hear me better, how I placed him in my lap to read to him (as his left ear needed to be closest to me) and I began to learn sign language to practice with him—just in case. He saw a speech therapist weekly. Virtual lessons twice a month getting help with early literacy strategies from an interventionist through the Listen Foundation.
It was a lot. It was stressful. It was overwhelming. I wanted to do my absolute best to help him. All the while I’m questioning ‘did I cause this? Did I not start prenatal vitamins soon enough? Did I not eat healthy enough while pregnant?’ ‘Could I have prevented this?’ I worried about his future. ‘Would he develop normal speech?’ Would school be challenging for him, etc.?’
A new city and new opportunities for Jack’s hearing loss
When Jack was 4 months old we moved to Colorado, about 1.5 hours from our otolaryngologist and his office. After waiting another three months, Jack was now 6 months old, the earliest age recommended to have a CT scan.
We met one of the most influential people who we are so incredibly lucky to have her expertise and support—Mickey—his auditory and speech therapist. She began working with me and Jack from the first week we moved to Colorado and is still with us today. So much of our success is due to her. She is the absolute best in her field.
As I look back, one of the most pivotal moments in Jacks hearing loss journey, is when he and I stayed the night in Denver at a hotel for a very early appointment. That morning, I went down to the lobby for breakfast. There was this huge burly man with a thundering voice. He said hello and was trying to get Jack’s attention. We were standing 2 feet from the man, and Jack’s back was to him. Jack spun around to the right side trying to see where the man’s voice was coming from and then turned all the way to the left to find him. He was unable to determine where the man’s voice was coming from, and it was very evident that this was not ‘normal.’ This was one challenge that I witnessed directly impacting Jack as a result of his single-sided deafness.
We were eventually able to meet with his new audiologist to gain more information, she stressed the importance of getting Jack’s portion of the brain stimulated that had not yet been stimulated due to his inability to hear and process information. She reiterated how valuable it is to have two ears to localize sound, have natural speech development and filter sounds in noisy environments such as a classroom or restaurant. My husband and I had already noticed that he was struggling and would become shut down in restaurants.
Along this journey, I ended up speaking with the previously mentioned family member of Jack’s audiologist. She was always so positive and happy to share her child’s success with cochlear implantation. Speaking with someone who had been through this was so reassuring and comforting. The other side of the debate of proceeding with a cochlear implant or not, was constantly hearing and being told, at least he has one good ear. Lots of people just have one good ear and are fine! After spending hours and months researching, this comment just angered me because there is a definite scientific reason we have two ears.
Giving Jack access to sound!
As a family, we decided we were committing to giving Jack access to sound on his right side. Our next hurdle was MORE waiting…followed by approval from our insurance2. Our hearing health facility sent the request for pre-approval a couple of months before the surgical goal date.
Shortly thereafter we received a denial letter from the insurance company to our house. Absolute devastation.
I immediately called the clinics billing department balling, saying how much my son needed this and that I had no clue what to do. The woman on the other end was so kind, heard me and told me it was going to be OK. She told me she would reach out to the insurance company and get back with me with more information. To this day, I am convinced this woman was an angel. She called me back within an hour, telling me it was taken care of and to get scheduled for surgery when available with the surgeon.
Jack’s current experience and an outlook toward the future
While it was an interesting journey for Jack to receive his cochlear implant, it was the absolute best decision we could have made for him. Cochlear’s technology is always improving to better aid recipients.
When Jack was first implanted, the external processor would fall off from him being a typical boy – wild and active, but now the retention concern has been addressed and he has a halo hair clip that enables the device to be more secure.
His sound processor is the very first thing he puts on every morning, and it’s the last thing to come off when we tuck him in. This technology has changed his life for the better. We have the best team in the world—Mickey, his audiologist and otolaryngologist/ear, nose and throat doctor. These three are truly so amazing and we wouldn’t be where we are today without them. There have been so many ups and downs along the way but if I could go back, I wouldn’t have spent so much time and stress deciding if we should proceed with a cochlear implant or not—hindsight, it was a no brainer.
I cannot even begin to put into words just how grateful we are for this amazing technology. I just want to say thank you. Thank you for giving my son access to sound!”
If your child has been diagnosed with single-sided deafness (SSD), cochlear implants may help them gain access to sound, just like Jack! Learn about cochlear implant candidacy today.
3- The Cochlear Nucleus cochlear implant system is indicated for individuals with unilateral hearing loss who meet the following criteria: Individuals 5 years or older who have one ear with a severe to profound sensorineural hearing loss and obtain limited benefit from an appropriately fitted unilateral hearing device and one ear with normal or near normal hearing.
- Insurance coverage may vary. Contact your insurance company or local Hearing Implant Specialist to determine your eligibility for coverage
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