A Cochlear Implant Changed My Brother’s Life

What my family learned in our journey at the advent of electronic hearing technology

Photo by Travis Isaacs/Flickr, Creative Commons

This story is about my younger brother, Patrick. It’s a story that deals with deafness, new technology, the pace of technological change, and even bullying. But most of all, it’s about how science can change lives. Indeed, it is about how one small device changed the lives of everyone in my family.

When I was 3 years old in 1997, on Groundhog’s Day, my little brother, Patrick, was born. Within 20 minutes of his birth, my family didn’t know if he was going to live through the night. I was too young to remember those heart-wrenching hours, but I’ve been told that Patrick was born very early, and was very tiny.

To me, the details of what exactly occurred during his birth don’t matter; all that matters is that he is here today. But there were other complications. Within six months, my family discovered that Patrick had cerebral palsy and was deaf. Patrick has generally manage to overcome the motor limitations of cerebral palsy through physical therapy and the leg braces that supported him when he was younger, which is a miracle in itself. Today, he plays basketball in high school and has a 15 to 18 handicap in golf — in other words, he’s quite good. Addressing his deafness, however, was not as simple as treating the cerebral palsy.

In the late 1990s, there were generally two schools of thought about working with deaf children. One approach was to get a hearing aid, and naturally progress through the help of that device. The other approach was to have the child and family learn sign language, and join the American Sign Language community. Of course, there are kids who have hearing aids and know sign language, but that can lead to the complication that my parents had to think about back in 1997.

My parents learned that in the deaf community and all-deaf schools, there can be distancing between children who born into families that are generationally deaf and those, like my brother, who are born into hearing families. The problem can be especially great for children who have hearing aids. My parents learned of cases where such children are harassed and mistreated. They heard how hearing aids are seen as an insult by some in the American Sign Language community, which has bonded around a language and culture that has formed over generations and generations of deaf families. On some level, the mere presence of a hearing device communicates that something is wrong with deafness, an affront to a community that has worked so hard to defend the rights of deaf people in a hearing world. Of course, the level of ostracization and bullying around this issue varies from school to school, and dissipates as children get older. But the issue weighed on my parents’ mind as they thought about Patrick’s educational future.

Ultimately, their first decision was to try a hearing aid. However, hearing aids only help those people who have lost their hearing, or have some residual hearing. Patrick was born with none, and the hearing aids didn’t work. But then, my family learned of a new technology that was in development. Luckily, my brother was going to be one of the early beneficiaries of its success.

A 2006 photo of a boy shown on the day his CI was activated. Photo by Ryan Poole/Flickr, Creative Commons

The cochlear implant (CI) was in development for a long time before manufacturing began in earnest during the 1990s. To avoid the scientific jargon, I’ll just describe the CI as an electronic replacement for certain parts of the ear that may be missing or not working in a person who is deaf. While hearing aids merely amplify sound, CIs generate signals that are recreated in the brain as sound. It was perfect for Patrick, and he was a perfect candidate for the surgery.

For the surgery, the surgeon makes an incision about one- to two-inches long above the pinna (the visible part) of the ear. This is where the doctor places the place the implant (the device that will recreate the signals). Then, a receiver is placed on — or rather magnetized to — the head of the patient. Often when I describe a cochlear implant, I say it’s a big magnet that sticks to the side of the head so a person can hear. The visible device on the outside receives sound waves that will be transmitted to the implant.

There have been many versions of the device over the years and I have seen the CI change from a giant backpack that takes 4 AA batteries to a small earpiece that uses rechargeable pea-sized batteries. The worst part about the device’s original design was that people treated Patrick differently because of the way it looked and the fact that it was so visible. It made my brother very shy and conscientious of his “disability,” and how he sounded when he spoke.

But it has been remarkable to see the device become smaller and smaller with the natural progress of technology. The best comparison I can make is to ask that you imagine an original cellphone next to the iPhone. Trust me, it is incredible. The original CI had wires everywhere, we went through a pack of AA batteries every two days, and the backpack was clunky and hit against everything.

A comparison of older and newer CI technology. Photo by Jerry Michalski/Flickr, Creative Commons

But it was apparent even with the earlier versions of the device how truly remarkable the CI technology would be for Patrick and my family. When my brother was around 10, he received his second implant in his left ear. Because he was older than when he got his first surgery, he could actually describe the feeling when that device was turned on. He was so shocked, apparently, my mom said that all he could say was, “Wow!” And over the years, the auditory gap between him and hearing children has closed immensely. People who have never met my younger brother have very little trouble understanding him, and his speech improves every day.

I remember the first time I came home from college, and my brother, being about 15 at the time, was going through the typical growth spurts that a 15-year-old experiences. Patrick was about 3 inches taller, his voice deepened, and he was speaking better than I had ever heard him speak before. He was a changed man; it was so incredible to see. Because of this tiny device, my brother was developing his speech more and more quickly, something I thought we would never see.

Illustration by National Institutes of Health Medical Arts

And my family is not alone. The CI has changed the lives of so many people; there are even stories of older deaf people who have relied on lip reading their entire lives who receive the surgery and have worlds open up to them. As of 2012 there were more than 324,000 people who have received the surgery and I’m sure that number has grown immensely since then. My family and I make it a habit, sometimes an annoying one, to introduce ourselves to anyone we see who has a CI. Even if they are strangers, we like to ask them about their experience with the CI, because our experience has been so positive and life-changing. My family has made many friends this way. I wanted to share this story because sometimes new technology or treatments can be scary. But sometimes, plunging into untested waters is exactly what a person and their family need to do.