While scrolling through your social media feed, you’ve probably seen a video of someone having their cochlear implants turned on for the first time. In these videos, infants, children and adults alike react emotionally to hearing sound through their new device for the first time.
Although these videos may be touching, having a cochlear implant activated can be painful. In this episode of the UPR original series Diagnosed, we hear the stories of a young girl and an adult from Utah and their journey of learning how to hear with a cochlear implant.
When Sara Doutré’s daughter Daisy was born, Daisy could hear. It wasn’t until Daisy was a year old that Sara discovered her daughter was losing her hearing. Six months later, Daisy was completely deaf.
“The great thing is we had a lot of options, but we had to make decisions really quickly,” Sara said.
Sara worked with special education students for 10 years before Daisy was born. She saw children who communicated well using sign language and children with cochlear implants who successfully learned to speak.
“I knew that no matter what choice we made for Daisy, the outcomes were going to be great,” Sara said. “I knew we just had to make a decision for our family and what we could handle.”
Sara and her husband wanted to make sure Daisy could communicate with her extended family members. It was also important to Sara to share her love of music with Daisy. With this view of their family culture in mind, the Doutrés decided to get Daisy a cochlear implant.
Before children have cochlear implant surgery, insurance companies require them to try hearing aids.
“When Daisy got her first hearing aids,” Sara said, “she did not stop screaming in the audiologist's office. Like eventually we just left with her screaming, because she did not like them and she didn’t like them in her ears. It was really hard.”
Four months later, after Daisy’s implants were placed, she was back in the same office for activation of her cochlear implants.
“Her cochlear implant activation day, like we have the video of it. It’s not as dramatic as some videos,” Sara said, “but she definitely heard. And you could tell. Like when they doing the beeps on the computer she looked at us and she smiled and she was excited and she clapped.”
Although Daisy didn’t scream and cry when the implants were activated, Sara says it was hard to get two-year-old Daisy to keep the external part of the implant on her head
“We had to think of things that were really reinforcing,” Sara said. “And so for Daisy, she really liked the piano, and so if I was playing the piano, and then I put them on her, I could get her to leave them on while I played the piano, and then sometimes when I quit.”
Grown-ups experience discomfort when their implants are activated too.
“At first I didn’t realize I was being talked to,” Eileen Poulson said. “I thought I was listening to cartoons.”
Eileen Poulson became deaf as an adult. Her cochlear implants were activated two years ago when she was 56.
“At first I hated it because I love music and John Lennon sounded like you know, Donald Duck,” Eileen said. “Everyone sounded like Donald Duck. It was awful. But, I kept with it. And people, sound like them. They don’t sound like Donald Duck anymore.”
Eileen was in a car accident 10 years ago and lost the hearing in her left ear. Four years later she woke up one morning and the hearing in her right ear was gone.
Doctors performed tests, but could not determine the cause. Eileen was able to use a hearing aid for a while, but two years ago everything went completely silent.
“The silence that you feel is devastating,” Eileen said. “When you wake up and you’re not used to it and to not hear anything. I really thought of finding creative ways not even live anymore.”
This isolation Eileen felt inspired her to write a book. She wanted people to know there was life after hearing loss.
“You get so tired of people saying I know how you feel,” Eileen said. “No, you don’t know how I feel, because you’re not deaf. You didn’t wake up deaf.”
It’s been five years since Daisy’s cochlear implant was activated. Now at age seven she’s mainstreamed in public school and is participating in a Portuguese dual immersion program.
“Even now she has an hour and a half of speech at school every week. We have a private speech provider that she goes to for an hour every week,” Sara said.
“Is Daisy’s speech perfect? No,” Sara said, “Is it good enough that she has friends at school and they all understand what she says? Yes.”
“For a long time I think I had this expectation that she was going to get cochlear implants, she would learn to speak, and her speech was going to be perfect. When she spoke no one would guess that she was deaf,” Sara said.
“Daisy loves her implants. And she tells me thank you for her implants quite often, and she likes having them,” Sara said. “And it’s just little moments. It’s when she hears something happening in the other room and comes in and comes into our room, or comes into the other room and laughs about something that I think, I think we made a good choice for Daisy.”
“I thank God every day that we have cochlear,” Eileen said. “I really do because I wouldn’t be able to do my job anymore. I wouldn’t be able to communicate, hear my grandkids. I would be so out of everything that I’m used to enjoying.”
Eileen’s book Scilence will be published soon. By writing her story down, she hopes more people will understand what individuals like herself and Daisy experience as they learn to hear with the help of this electronic device.
Support for Diagnosed has been provided in part by our members and Intermountain Budge Clinic, a multi-specialty clinic offering care for every member of your family in one location. Details found here.