When Christina, from the US, found out that her son Kai had lost his hearing, she was devastated. Then she heard about cochlear implants, and knew immediately that this was the right thing to do for her son. In today’s blog post she tells Kai’s and her story.
My name is Christina and I am a 31-year-old single mom from Brooklyn, New York. I am a Mental Health Counselor and mom to a super adorable, super cool, super smart boy Kai, my only child. I enjoy traveling, organizing events, and spending quality time with my family, especially with my son. My favorite thing to do at the moment is to take swimming lessons with Kai. Kai also loves hanging out with his big cousin Ryan and pretending to cook in their play kitchen or going to the park to have some fun on the swings or on the slide.
Diagnosis: Hearing Loss
Kai was born a healthy child and I stayed home with him for 7 months of maternity leave. Soon after I went back to work he fell ill and contracted bacterial meningitis. Kai had to stay in the hospital for 41 days, and there I was also informed that his hearing could be impacted by having meningitis. But I was sure that he was unaffected. I felt like he was hearing me just fine when he was discharged because he is a very interactive child and looks people in their eyes when they approach him, so I felt like he was hearing it when we spoke.
I took him for a hearing exam a couple of weeks after his discharge and was informed by the audiologists that he failed the exam. I was certain the test must have been wrong. The audiologist repeated the test for a second time and received the same results. He then scheduled Kai for an ABR exam, an Auditory Brainstem Response test. While I waited for the date of the ABR to approach I did things at home to see if Kai really couldn’t hear. I would clap behind him, drop things on the floor to try to startle him, I even had my brother use an air horn in the house while Kai was sleeping and he didn’t flinch an inch, there was no response to sound. The test confirmed Kai did indeed lose his hearing in both ears.
Going For A Cochlear Implant
When my family and I learned about my son’s hearing loss we were devasted. Shocked. Angry. Heartbroken. Overwhelmed. I felt like I failed as a parent because I could not protect him from getting this severe illness, and now he has health issues that I wouldn’t imagine he would ever face.
I couldn’t imagine Kai not being able to experience the world around him without sound, especially because he was born hearing and sound was a part of his world for at least the first 7 months of his life. He had begun saying “Dadda” and babbling so much at about 6 months old.
I could not imagine my baby boy not being able to hear my voice, hear me tell him how much I love him, or how proud I am of him, or how smart he is. I couldn’t imagine him not being able to hear his own voice and to speak! Or to hear music (which he loves by the way) and find his own little rhythm in this world.
When I learned about cochlear implants, and how it worked I was sold! I felt like Kai regaining access to sound was a huge victory for him and our family after everything that he had been through.
The process was exhausting but the staff at Cornell, Kai’s clinic, was amazing! During one of Kai’s pre-op appointments, an MRI was done to take a closer look at his ears and it was discovered that he had a small aneurysm that required an embolization to stop the bleeding. Had Kai not been scheduled for surgery for his implants, no one would have never known he had an aneurysm and it would have been left untreated! He was able to have the embolization done during that pre-op visit and still was able to proceed with the scheduled date for surgery for his implants, which was maybe two weeks or so after. The entire team at Cornell is heaven sent. They truly are. They were so comforting, knowledgeable and helpful during the entire process.
When I was told that Kai was a candidate for a cochlear implant, I was given the choice of three implant brands and MED-EL was one of them. After having very in-depth conversations with our surgeon, I was able to make an informed decision about which brand I would like to go with.
There were two huge factors for me that made me choose MED-EL: One was the selection of electrodes. Kai had scarring in his ears from the bacterial meningitis, so I wanted his doctor to have decent options with getting an electrode in. The other huge factor was that MED-EL is MRI safe.
Due to Kai having small strokes on his brain (caused also by the meningitis) and an aneurysm, I wanted to ensure that if he needed another MRI for whatever the reason he wouldn’t encounter any complications.
The first months of Kai using his implants were interesting for me. It was a little overwhelming at first, with getting to know the parts and how to assemble everything, and the mapping appointments every other week. But once I got the hang of it, it was pretty easy. I’m amazed at Kai’s progress all the time! He was activated in April and he is babbling so much and trying to say so many words. I can hear him trying to form the sounds he hears. More than anything I see that he comprehends almost everything that I tell him. Even if he doesn’t say certain words, he understands when I talk to him. His comprehension blows my mind. Kai currently also takes speech therapy 3 times a week. He also receives special education through early intervention. I can see how beneficial Kai receiving services at such a young age is.
Sharing Our Journey on Instagram
After Kai had been implanted, I decided to create an Instagram account called hearandnow__ because I needed an outlet to share what I was experiencing. I felt alone and I kept a lot inside. I didn’t tell anyone about what happened to Kai. My family and job were the only ones who knew. He was discharged from the hospital a few days before Christmas and I didn’t share publicly what happened until February 8th. It was eating me up inside to not speak about it. I wanted to be able to speak about what happened to Kai to lift some weight off my heart, but to also educate the people around me about what happened to him and show how he is bouncing back. I also wanted to try to connect with other families that were like me and shared similar experiences. I also created a GoFundMe campaign to raise money to purchase headbands that would help keep children’s audio processors in place.
Helping Other Families
When Kai’s “ears” were activated we were so excited! It was a truly unforgettable day. However, when we got home from our audiologist, his processors were constantly falling off. Kai was an active 1 year old at the time, crawling, rolling and just moving all over the place. Every 2-5 minutes his processors were falling off. I was so frustrated. I felt like it almost defeated the purpose of him having surgery for the implants if his “ears” would be constantly falling off and he isn’t using them. I learned about the Hearing Henry headband, which was created by a mom of a cochlear kid that experienced my same frustrations with her child and she made this headband to help keep the processors in place. I bought one and I loved it! It was so helpful and comfortable for Kai to wear. Once I got the headband Kai’s processors were in place practically all day until bed time. It was a lifesaver.
I thought about how many families must experience the same frustration with their children after their activation day and I thought about how I could help that process. I wish someone had given me the headband the day his “ears” were turned on, so I wanted to give families something to go home with on their activation day that would be helpful for them. I figured they can at least use the headband until they figure out another alternative if they wish to keep their child’s “ears” on, and a special day doesn’t have to be met with disappointment or frustration when they get home. I was able to reach my goal and raise the money to purchase 100 headbands to donate to different organizations that work with children who have cochlear implants. I purchased them from Hearing Henry and Genie Bands. I decided to donate to two hospitals and two auditory and oral programs that work with small children that have cochlear implants.
Wishes For The Future
My wishes for Kai’s future are that he will develop speech normally and be able to hear the world around him the best he possibly can.
I want him to grow up to be an outgoing and inquisitive child, who is proud of who he is and all the things that make him unique. I want him to be proud of his cochlear implants. I want him to be knowledgeable about his implants and educate people around him if need be.
I want him to be aware that everyone needs assistance with something or the other at some point in their lives and that he requires assistance with his hearing and there is nothing for him to be ashamed of. I want him to be an advocate for himself. I want him to dream big.
This entire process of learning that Kai lost his hearing, then to getting bilateral cochlear implants has been an emotional rollercoaster. It has been overwhelming at times, but it has also been amazing to watch and experience. I am constantly in awe of Kai’s progress with speech and hearing, and it wouldn’t have been possible without his cochlear implants.
Interested in more user stories? Read how Lia’s parents are doing everything to fight Usher Syndrome, and how bone conduction transformed the lives of many people.
Photo Credit: Nicole Najmah Abraham
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