Hearing aids and cochlear implants

Hearing Aids
I’ll never forget the day he got his first hearing aids. We were in the audiologist’s office and they brought out these two little hearing aids with the little ear molds and they got him in his ears and they turned them on and the first thing he did was give his father the biggest smile. So from then on we knew that he could hear us and that hearing aids would probably benefit him. That first day was fabulous, but then after that he decided, “I’m not having any part of this,” I mean he was a four month old baby. And his teacher for the deaf told us, just stick with it. Just put them in even if it’s for an hour a day and you build it up and stick with it and it’s going to be frustrating and hard to know when he’s had enough because babies cry. You know, is he hungry? Is he frustrated because he’s had enough? It was hard to know. We stuck with it and otherwise we would still be struggling with it today. Now he asks us every day for his hearing aids and he always does a self-check every time we leave to make sure he’s got everything he needs. He’s making sure he’s set to go.


We Started to Think About It
When he was one year he got his first cochlear implant. When we got the first implant, bilateral cochlear implants weren’t something that we considered. As time went on we started hearing about more and more children and adults who had two. We started to think and read about it.


CI Activation
When we found out [he was eligible for a CI] we were so excited. He was scheduled for surgery before he was a year old. Because he got sick and we had to postpone the surgery, he got the surgery at 14 months. We were so happy and excited. I remember waiting for the activation day and we thought that he would hear right at the moment of the activation even though the audiologist had explained that it would take months for him to reliably respond to sounds.


Giving Him the Tools He Needs
It was really about giving him another tool and giving him all of the tools he needs and access to all the opportunities he’d have to be able to succeed and do whatever he wants to do. We talked a lot about leveling the playing field with his peers. There is controversy that exists in the deaf community but I’d say it’s gotten better in the last few years. We certainly met people who thought we shouldn’t get a cochlear implant and we also met people who thought we shouldn’t be signing with him. We met people from both sides. For us it was all about giving him another tool. The reality is that this is a hearing world and if he had done ASL only without the cochlear implant he would have been fine, but I think his world would be much smaller and his opportunities would be smaller. By doing this it gives him more opportunities and more ways to communicate with all different kinds of people in all different ways.


A Red Sox Game Made the Decision to Implant
We talked to people and we brought her to three different hospitals including this one to have evaluations done. This was one of the later hospitals. The doctors were all saying the same thing: “Get her a cochlear implant, get her a cochlear implant.” My own doctor said that to me and it didn’t feel right. Honest to God that’s how I function, I go by my gut and at that point it didn’t feel right. I wanted to teach her ASL. I wanted to learn more about deafness. I wanted to learn more about the Deaf community and just get involved in that. I wasn’t convinced that the cochlear was the way to go. I really wasn’t. I was handed a baby I knew nothing about and never will know anything about the medical history. I needed to be reassured that this was not going to harm my child. I heard research about Asian babies who were being implanted and that threw off their balance. I’ve got an Asian baby, why would I do that? It was looking at things and trying to go with the ASL. Then we got her hearing aids. They told me “they won’t work, just get her a CI.” I didn’t like how everybody was so quick. I started reading about cochlear implants and watching movies and getting materials about it. And to be honest, it was a Red Sox game that we made the decision. We were stuck in traffic waiting to get here for two hours and in that time my husband and I sat on whatever that street and just decided that regardless of what they said today, we were going to pursue the cochlear implant. We were meeting with the cochlear implant team to learn about it. We decided in the car that day that that’s what we were going to do. I just want her to have every option possible. If she wants to take that thing out when she’s nineteen, go for it. I also understand about how the brain develops and feel that we can’t catch that time back up. I know that she should have been implanted sooner if I was going to do it but I couldn’t.


She Wanted to Hear More
We had the one implant and we were saving the other ear for new technology because it changes so fast. We’d make a decision when she was older. The audiologist was sharing information with us that indicated that if children used their auditory nerves before age 8 that they had a better chance of getting better use out of them. We go to cochlear implant conference every two years in Sturbridge and they had a lot of information about bilateral implants. It really got my husband less stubborn about saving that ear. It was actually my daughter herself who said “I want to hear Joshua when he whispers in my ear.” It became a theme with her. She wanted to hear more. She wanted to hear other kids. She wanted to hear on the other side. As she came home every day expressing her interest and her frustrations we thought we’d start with the work up and one thing led to another and we ended up with bilateral implants.


We Really Resisted
Initially we really didn’t want to do that. She was getting a lot of benefit from the hearing aids and we were really scared about intervening in that regard in a way that is permanent and might close off other options in the future. We really resisted. We realized she did really well in one on one situations but that’s somewhat artificial and you can try it but that’s not what her life was going to be like. The motivation for her implant was partially to improve her intelligibility, which is pretty good but we were told it’s going to get even better now, and hopefully to make her hear better in these more social situations. That’s why we did it. She’s only been activated for six months and she’s doing really well but she’s a little disappointed because I think she thought it would be a cure. While things are definitely better I don’t think it’s as dramatic as she hoped. I think there’s still gain to be had. It is better. We’ve all acclimated to the idea that she’s hearing better but it’s not what she wants.


We Didn’t Want to End Up With Nothing
Her hearing loss just gradually got worse. So we had two hearing aids, but her left ear got to the point where she just wasn’t benefiting from the hearing aid, so one of the questions was about her cochlear implant. So for us, it got to the point, you know she was always hearing with two hearing aids, but then the one ear got to the point where there really was no benefit. So it wasn’t a hard decision to get an implant because we wanted to keep both ears hearing. And then we didn’t know with CMV if the hearing loss would keep going, we didn’t want to end up with nothing. So we decided to implant her worse ear, because she still had residual hearing sensitivity in her right ear, which she still has today. So when she was three, that’s when she got her implant. So we got the implant in her left ear, and she still uses her hearing aid in her right ear, and she likes the both.


He Fell and Needed a Second Surgery for Re Implantation
Zuriel was playing with his dad in the living room and went to jump on him, but his father looked down for second because his cell phone rang, and wasn’t able to catch him in time. Zuriel proceeded to hit his dad’s leg in an awkward position and fell over, head first, directly on the wooden coffee table. Zuriel’s head just happened to land perfectly on the magnet/ internal component of the implant. He ended up needing to have another surgery to repair the implant. It was much easier the second time around because we were able to communicate with Zuriel much better. At this point, we possessed more signing skills to explain to him exactly what he was going experience in the next few weeks. At the same time, he had made great gains in his signing abilities and understanding. It also helped that he was older and more mature. We (our family, teachers, and speech therapists) were able to prepare him for every aspect of the process. So, Zuriel had time to absorb all of this and was able to anticipate what he would experience and when. He didn’t seem scared or unsure at all during the entire ordeal because he knew what was happening all along. The day of the second surgery he actually woke up excited and was surprisingly agreeable. He got right out of bed, grabbed his hospital bag off his bedroom doorknob and signed he was ready to go to the hospital. We were more anxious and scared than he was. It felt so good to know that he was aware of what was going on and that he was comfortable with it. What happened to Zuriel, in regards to his implant failing, was just an unfortunate freak accident. But, I would just say to parents and children with implants to always remain aware of the objects and surfaces of areas children are playing in.
He Was Born Deaf, Let Him Be in a Quiet World
He had a doctor and he suggested the cochlear implant. We went to a couple of those prep classes for you to get ready for the cochlear, but I read or found some information on a website, that said that children that had a cochlear lived in a deaf world anyway. So…if he’s going to be in the Deaf community anyway, I just left him the way he was. Something a little like that I picked up and read that said to me don’t change it, just let him be, he was born deaf let him be in a quiet world.


When They’re Not On, They’re Deaf
We can implant, but when the hearing aids aren’t on, and the implant is not on, they’re deaf.


I’ll Never Forget the Day it Got Turned On
It’s really been remarkable to look at the impact the implant has had on her, and especially because we were toying with trying to figure out what to do. We spent two years trying to figure out the whole hearing aid issue, what works and what doesn’t. And for us, after she got the implant, I’ll never forget the day it got turned on, and watching her sitting in the little rocking chair playing, and when the audiologist finally pressed the button and turned the thing on, I remember she had a block, and she was turning it over, and she was just amazed that she could hear it. It was unbelievable watching her doing it. I remember when we were talking to her and she was looking the other way, she never had sound in that ear, so she was all confused. But ultimately, it’s been terrific. It really has made a great impact on her. Her hearing is really no longer the issue.


Hearing Birds for the First Time
I remember coming in to the 2nd day of mapping. We were walking out of the parking lot and she stopped. She said, “What’s that?” I replied, “What?” She pointed up and said, “That?” I stopped with her and I was listening with her. She heard the birds. She repeated, “That!!” I said, “That’s the birds Cristina.” She asked “That’s the birds??” She was hearing the birds for the first time with her cochlear implant and that was pretty neat. That’s when I start thinking that sometimes we take things for granted. It’s interesting because one time she said to me, “you don’t know what it feels like to be deaf” and she’s right, I don’t know. But I do know what it feels like to be a mom of a deaf child.


Adjusting to the Second Implant
She was one and a half when she had the first one. As a seven year old she didn’t remember the work she put into utilizing it. She thought she’d get it and turn it on and hear. When it came time it was a lot more work than she anticipated. It still can be a struggle sometimes. She wears it most days for twelve hours. Some days she’s tired and she’ll take it off a couple hours after coming home from school.