A Father’s Outlook

By Mike Bensheimer

It was an unusually cool October day back in 1998 when my first son came into this world.  I couldn’t be prouder or more overwhelmed about being a father.  Trenton was born early that crisp morning. The pregnancy was as typical as they come and my wife, Jaynie and I were just starting to feel comfortable about being parents. The next day would change everything. I remember the doctor came in and told my wife and me that Trent might be hard of hearing and that she wanted to do a newborn hearing test as soon as possible. “What? Why are you telling us this?  What makes you think he can’t hear?” These were the questions running through my head.  Our first emotion was disbelief and then the second was anger. Why are you telling us our perfect son cannot hear? The doctor had to be wrong!

She wasn’t. Trent did not pass the newborn hearing test. He retook the test a few months later and failed again. The audiologist confirmed that our son had a profound hearing loss in both ears. After many tests we learned that Trent was born with a rare defect in his inner ear called Mondini Dysplasia. This is occurs when the cochleae are not formed completely. Where a normal cochlea has two and a half turns, Trent only has one and a half. Being new parents and knowing nothing about hearing loss, we tried to learn as much as we could in a short amount of time and turned to the professionals. We knew we wanted Trent to learn to listen and speak like a typical child, if possible, and one option the audiologist suggested was a cochlear implant.

Would a cochlear implant work for our son? My wife and I felt that since Trent already had profound hearing loss in both ears he really didn’t have anything to lose. The audiologist mentioned that there was a clinical trial with a cochlear implant system from MED-EL. One local Speech Language Pathologist said they noticed faster gains in speech performance with this device in new users. There were also several electrode options that offered a way to work with Trent’s cochleas, which the other two implant designs did not offer.

At the time, MED-EL was not approved by the FDA and the health insurance companies were just learning the benefits of cochlear implantation. These were two hurdles we had to get over if we wanted our son to be implanted.  Our otolaryngologist had to write a letter to the FDA explaining Trent’s abnormal inner ear and that the MED-EL implant and electrode array options would be best suited for his anatomy. We also had to argue that the device was medically necessary. My company’s health insurance had never heard of a cochlear implant and the fact that the device we chose was not FDA approved was a real challenge. After waiting weeks for the FDA waiver and attending many meetings with my employer and human resource department, they finally agreed to approve our son’s surgery. Thinking back, it’s amazing how much more information is available today through the internet and patient advocacy groups. It wasn’t that long ago that we relied more heavily on hearing loss professionals for their guidance and advice.

Trent finally received his first implant when he was 15 months old. I think the surgery was much tougher on Mom and Dad than it was on our little guy. Hearing loss was new to all of us, and we were going through this together. As a first-time dad, I had so many hopes for my son. I loved music and wondered if this love was something that we would ever be able to share together. It only took a few days before he was back to normal. The day of activation is something I will never forget. My whole family was there, and when the audiologist turned on his audio processor, we all were making noise and talking. He would look and smile at each one of us. We knew then that our son could hear!

From the start, my wife and I have shared the responsibility and time commitment that have come with our son having a cochlear implant. Because of my job as a special needs bus driver, though, I had a more flexible schedule than my wife, so I was able to take the lead and really learn from the auditory-verbal pathologists. I’ve also since taken on a role as a Patient Support Team (PST) member at MED-EL, which has allowed me to learn even more about how cochlear implants work. This background has helped immensely when working with audiologists and at mapping sessions.

A few years and many speech therapy sessions later, data started to appear that people with bilateral implants were seeing great improvements in speech language development, as well as sound localization. We once again went to bat for our son to convince our insurance company to cover a second device. On Trent’s seventh birthday, he received his second cochlear implant. We’ve found that having bilateral implants has helped Trent localize sounds in situations where there’s a lot of background noise, like a cafeteria.

Trent is now 13 years old and is doing amazingly well.  He is mainstreamed in our local middle school, on the A/B honor roll and a member of the National Junior Honor Society. He played baseball and was able to leave his external processor on with his helmet. While he takes the processor off to swim, he read lips well and learned to swim little by little, getting braver and more confident with each stroke. He’s constantly “plugged into” his iPod and indeed loves music as much as I do. He has made good friends at school and his hearing loss isn’t something that they focus on. I think most parents are sensitized to bullying, whether their child has a disability or not, but this hasn’t been an issue for Trent.

I have learned that as a parent, you have an idea of what you want for your child. We wanted Trent to be independent, to speak up for himself and to achieve every goal he has. It hasn’t been easy, but looking back, that day the doctor told us of Trent’s hearing loss was really a blessing.  We wouldn’t change a thing and we’re amazed at how well he has done and continues to do. We were told early on by one speech-language pathologist not to expect too much. I think perhaps she wasn’t familiar with Trent’s unusual situation and didn’t want us to be disappointed.  He was a bit of an underdog, and we’ve been proving her wrong ever since.  I’m glad that we didn’t believe her, because he’s come out on top.

Mike Bensheimer, Greenwood, IN, is a bus driver for children with special needs, father of three and on the Patient Support Team for MED-EL.  As a part of this role, he talks with families who are evaluating cochlear implant options for themselves or their children.