Transition to Implants: A Family Story

By Jeannine Evenstad

The last time I wrote an article about our family I wrote, "our journey continues and takes different routes here and there." That statement proved very true over the last year or so.

Our middle child, Brian, was identified at birth with a moderate to severe hearing loss. His hearing loss slowly progressed over eight years to severe to profound; with his right ear hearing less than his left. Last November, we purchased his fourth pair of hearing aids when he complained that the digital hearing aids he had were not loud enough. His new hearing aids were digital but processed more like an analog hearing aid, giving him the louder sound he liked. At this point, we had an idea that an implant would probably be in his future; we just weren't sure when.

He was doing well in school but by the end of the day he was coming home fatigued and unwilling to participate in activities outside of school. His second grade teacher reported at the spring conference that by the end of the day he seemed to just "zone-out." Despite using an interpreter and an FM system in the classroom, it had become apparent that he was using all of his energy trying not to miss anything. He started complaining that he couldn't hear the other kids when they were talking in class and wanted to know if an implant would help. He was still doing quite well in school but school wasn't as fun. We knew the bar jumps a lot in third grade and felt maybe this was the time to start making some big decisions.

His primary care physician referred us to a surgeon who referred us to an implant center. Our insurance company didn't let us choose a surgeon or an implant center, but thankfully we knew the implant center and audiologist were one of the best. We also knew the surgeon was very experienced and Brian would be in excellent hands if we decided to have the implant surgery. As part of the evaluation procedure, we saw two different speech therapists; one who assessed his language and the other who assessed his use of auditory/verbal skills. An evaluation was also filled out by the school speech language pathologist and sent to the surgeon. Everyone agreed he would be an excellent candidate for an implant. The last step was seeing the surgeon who would have the final say as Brian was a borderline candidate. The surgeon approved the surgery pending an MRI. We were pleased that our surgeon and audiologist made it clear that a cochlear implant is not a cure for deafness and even though Brian appeared to be a perfect candidate there was always a chance he might actually hate it. We weren't given any false illusions. Both the surgeon and audiologist spoke directly to Brian, not just to his father and me. We had no idea the approval process would take so long, but we were relieved that the evaluation was so thorough.

The date was finally set: June 30th. We had hoped sooner, but this still gave him plenty of time to adjust before school started. Brian was very excited and marked June 30th on the calendar with a big star. The night before surgery I think we slept about two hours. At about three a.m., I asked my husband, "What do you think the surgeon is doing right now?" He said, "I hope sleeping and not worrying; surgery is his job. I would be very concerned if he stayed awake worrying." Grandma arrived at our house early and we headed to the hospital. The adults covered up their nervousness, and Brian was seemingly not worried. He brought his favorite pillow and fleece blanket on the advice of friends who had recently gone through this surgery. We also brought our camera which I wouldn't have occurred to me if our friends had not taken pictures when their daughter went for surgery.

Prior to surgery Brian received his IV for the anesthetic and met the anesthesiologist. Brian was very insistent that he be completely awake when he went to the operating room because he wanted to see what the room looked like. So, off he went without any "goofy" medicine. When they rolled him away, my stomach did a flip. It seemed that all I could do was walk, my mother tried to crochet, and my husband sat very quietly. They called on my cell phone within an hour to let us know Brian had done beautifully and had asked lots of questions before going to sleep. They called midpoint and then at the end when they were testing the device. The updates were very reassuring. Finally, after what seemed like an eternity, the surgeon came out to let us know things had gone well, and we would be reunited with Brian shortly. My husband asked the surgeon what he was doing at three a.m. He said, "Sleeping soundly."

I stayed with him in recovery a short time then we were moved upstairs to our room for the night. As soon as he was awake, he asked for his left hearing aid. Our surgeon prefers an overnight stay which I hear is rather uncommon. I was relieved to be staying in the hospital. I knew he would be monitored and I could devote all my attention to his needs. His brother and sister came to visit later. In hindsight, we should have prepared them better. His older brother worried that Brian was so quiet, and that his eyes looked funny. He was relieved to see Brian looking more normal the next day. The next morning the dressing came off, and we headed home. Within a couple of days he was feeling great.

He could still hear fairly well with his hearing aid in his "better" ear so there wasn't frustration on his part waiting for the initial stimulation. At three weeks the implant was turned on. There was no "wow" moment for us as he had always heard. Brian seemed to have no adjustment period. We were prepared for him not liking the sound and wanting his left hearing aid back. He said I sounded a little funny but dad sounded fine. By evening he could discriminate all the names in the family, and could tell his "ling" sounds through audition only.

He went from hearing aid wearer to implant wearer overnight.

The only sound he doesn't like now is the vacuum, and a new sound is the oven timer. He told me one day that sometimes he hears a beeping sound then it just stops but not the same beeping as when his batteries are going to die. We were in the kitchen a few days later when the timer went off. He said, "Mom, I just heard that beeping again." Mystery solved.

He started wearing his left hearing aid again one month after the initial activation of the implant. School is going well. He uses an FM hooked to his implant and still utilizes an interpreter. He still has a tough time understanding the other kids in large groups but in small groups he reports he hears well. His soundbooth testing is outstanding, but we are going to do a functional listening evaluation in the classroom to see how things are in the "real" world-- more or less. He was referred for twenty sessions of speech therapy to an SLP who specializes in implants and is in close contact with our audiologist which is valuable for mapping updates.

I'm guessing you're thinking and/or hoping our story ends here, but it doesn't.

About the time we seriously started considering an implant for Brian, his little sister, also born with a hearing loss, woke up one morning and told me her hearing aid was broken. Unfortunately, the hearing aid was fine; it was her hearing that was "broken". She had had one significant hearing fluctuation when she was two, but this had resolved itself. Her hearing was in the moderate/severe range and she could hear within the normal to mild loss range with aids. Her left ear dropped between 20 and 30 DB seemingly overnight. It went back up briefly then dropped further. Between January and April she went from a moderate loss in her left ear to 115DB. She went from being very chatty to very quiet. School was hard but fortunately she had very supportive teachers and an excellent interpreter. She had a lot of tantrums which was not her personality. She was frustrated with me because I wouldn't "fix" her hearing aid. It was a very rough time. I'm not sure when we decided to implant her. Understandably, those months are somewhat of a blur. I think I was denying the fact that her hearing in the left ear was gone. Her right ear dropped a little but she still had useable hearing.

Even though she was a definite candidate, she went through the same "approval" process as Brian. The professionals we have work as a team, and everyone is part of the decision. Again, the process seemed to take forever, and I felt such urgency for her as she was so frustrated. When school let out, she seemed to do better. We assume she wasn't tired from processing everything at school, and she was adjusting to the new loss.

The surgery date was set for August 30th; the day before she was to start first grade.

She seemed to go in as carefree as Brian. Of course, grandma, dad, and I were just as nervous. This time I didn't have the urge to walk constantly and time seemed to go more quickly. Unfortunately, she had severe vertigo following surgery and was very sick the entire afternoon and evening.

We had been warned this could happen, and it was totally normal, but this did not help to ease the worry. Brian's surgery had gone so smoothly I hadn't expected any problems with Emily. Again, I was very happy to be at the hospital overnight. All I could think of was "What if this never goes away?" Luckily, the next morning she was still a little dizzy but able to keep food down. She was vertigo-free the next day. She was ready to go back to school on Friday, two days post-surgery. I was concerned that the kids would be freaked out by her incision so I tied a scarf around her head. The first thing she did was take off the scarf and show everyone her stitches. The kids thought they were cool and her teacher let her share the picture book we made of her surgery. In hindsight, it was a very fun way to start first grade.

She was able to wear her hearing aid for the first two weeks of school then her implant was turned on, and we took the hearing aid away for a month. Her initial activation went well also. She took a little longer to adjust, but she was in school so she had a lot more stimulation to adjust to. She didn't complain at all, but she was very tired the first couple of weeks. When it was first turned on, the interpreter had to tap her every time the teacher began to speak if Emily wasn't already aware. It didn't take long before she was looking when the teacher spoke on her own. She also uses the FM system.

She is back to her chatty self; like Brian, she seemed to go from hearing aid user to implant user with few problems.

I know both my kids had the benefit of "hearing" with hearing aids all of their lives and excellent language skills. I'm sure this made the transition process easier. We have no regrets, but I know an implant is not for everyone. The adjustment has been seemingly easy for our children, but it has and will be a lot of work. Every family has to make their own decision, and each family will choose their own way to make the decision.

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