When we received word that my daughter’s cochlear implant (CI) was failing, we were terrified. What would it mean for our daughter? She has had been doing so well. She received her first CI at age two. At that time, there was a huge gap in her receptive and expressive language compared to other children her same age. Once she was implanted and receiving weekly auditory oral therapy, she took off. I could see the language gap closing!
Now, at age four, she had the language to verbalize that she was hearing a strange “crackling” sound. Her dad and I noticed that she was saying the word “what” more often. After a visit to her audiologist, with an AB clinical specialist joining us to test her device, we learned she was experiencing a “soft failure.”
There are two types of failures. The first is a hard failure, which happens when someone is suddenly without sound. There is no communication between the external and internal devices. Then there is the soft failure, which is more difficult to recognize. Soft failures are generally determined by a noticeable decrease in hearing performance. For us, it was our daughter saying “what” more often, her audiogram looking different, and her mentioning the crackling sound she was hearing.
Even though I knew her device was failing, I was scared to have it taken out. What if her revision surgery had complications? What if her ear would be damaged and she’d be unable to hear again with a CI? Would it be like starting all over again, and take months or even years of intensive auditory rehabilitation to get back to where she was prior to her failure? These were some of the questions that ran through our minds.
Even though I knew her device was failing, I was scared to have it taken out.
When she received her CI two years earlier, a removal procedure was the furthest thing from our minds. We knew we wanted our daughter to have a CI even though there was a lot of controversy surrounding CIs in infants and young children in the small community where we lived. All the research we had done told us that the earlier young children received CIs, the better the outcomes.
We wanted nothing more than for our daughter to be able to hear and learn how to speak. We wanted her to live her life without limitations or without having to rely on others to let her know what was being communicated around her. We wanted her to hear us tell her how much we loved her. We wanted her to hear!
When we had researched cochlear implantation, we saw that all CI manufacturers had a very high reliability rate and knew that CI removal was not common. Now that we faced CI revision, some asked if we were sure we wanted to go through the process again. Others asked if we would stay with Advanced Bionics. That was NEVER a question in our minds. Her AB cochlear implants gave her the gift of sound and the gift of spoken language. She was living life just like any other four-year-old. We were determined to get her re-implanted. Seeing her struggle to hear made us more determined to get her revision surgery as soon as possible.
Throughout the entire process, Advanced Bionics was absolutely incredible. They supported us every step of the way. They checked in on us, they covered her internal device, they offered to reimburse us for our gas, food, and hotel costs associated with her surgery. They knew how difficult it was for us to learn that our daughter needed to be re-implanted, and they wanted to do all they could to help alleviate our stress. Knowing they were there for us and truly cared helped us get through that time.
We were able to get her scheduled for her revision surgery quickly. We weren’t sure what to expect, but things went as smoothly as the first surgery had. She was back to her usual self within 24 hours of the surgery. But the question in our minds still lingered regarding what rehabilitation would be like post-activation. Activation day couldn’t come soon enough!
To our surprise, activation went very well and she was understanding speech and language during that initial activation appointment. She was thrilled to be able to hear again within a few weeks. Her auditory verbal therapist and teacher of the deaf felt like she was back to where she was prior to her need for revision surgery. We had expected months of auditory rehabilitation to get her back to where she was, but she was doing incredibly well!
The decision to have her cochlear implant removed and get her re-implanted was the second best decision we’ve ever made for her.
As time went on, her speech became more crisp and clear, her hearing more acute. She not only had age appropriate speech and language, but her language surpassed her typical hearing peers by the time she mainstreamed into kindergarten.
The decision to have her cochlear implant removed and get her re-implanted was the second best decision we’ve ever made for her. We are forever grateful to Advanced Bionics for their superior technology, which gave our daughter the gift of sound.
Our daughter is now 18 years old and about to head off to college. She was a high honor roll student all through high school. She also took six college classes last year during her senior year while working a part-time job. She has truly soared! I know that she would not be where she is today had we not made the decision we did to get her CIs. Her hearing journey may have had a slight bump in the road, but what a beautiful journey it has been!
If you or someone you love is going through a CI failure, know that this is just a hurdle to overcome. Don’t throw in the towel or give up on your dreams of hearing well again. Talk with your audiologist to get back on the path to better hearing. Your family, your hearing healthcare team, and AB will support you every step of the way.
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Alison entered the field of deaf education after learning that her own daughter was born deaf. Ali received her master’s degree in special education from the University of Arizona. Ali is a certified listening and spoken language auditory verbal educator. She worked as a teacher of the deaf for thirteen years before joining Advanced Bionics in 2018 as a cochlear implant consumer specialist. She loves being able to educate individuals about cochlear implants and what is possible for those who are born deaf or for those who lose their hearing later on. Ali lives in Utah with her husband and four children.