Sarah Simmons Trull - COCHLEAR IMPLANT BASICS
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Sarah Simmons Trull

It is every parent’s worst nightmare to discover their child has a serious health problem. The Trull’s son was two years old when he was diagnosed with a profound hearing loss.

Frequently on social media, a parent will post a desperate plea for some guidance. There is nothing to prepare them how to deal with this problem. Where do I go? Is there a treatment? How will my child fare among peers with a hearing loss? The questions are almost endless. As it has been stated before, all hearing losses are as individual as our fingerprints. There is no one correct answer.

When a cochlear implant has been recommended as a solution for a pediatric candidate, there are more layers of questions. What does the operation entail? Is my child too young? Will my child have speech development? Should the family learn sign language?

In some cases, the hardest decision of all appears to be; do I have the right to make the decision for my child or should I wait until they are older to make their own decision?

Sarah Simmons Trull gives us her and her husband’s experience and perspective. Their son received bilateral cochlear implant surgery when he was 2 years and 9 months old. He is now a happy ten-year-old with very proud parents.

Transcript

Voiceover:

Cochlear Implant Basics is a site for candidates, recipients, and their families and friends. If you or a loved one is profoundly hard of hearing, newly deaf, or have experienced sudden hearing loss, we are here to share our stories and tell how receiving a cochlear implant can be a life-changing event.

Voiceover:

This site is not medical advice, nor is it brand specific. Within these podcasts and videos, you will meet recipients who faced hearing loss situations and hearing aids could no longer provide comprehension of speech or music. They share the stories of how they lost their hearing, their struggles with growing isolation from their family and friends, their inability to compete in the world of business, their difficulties of navigating air travel without hearing, how the joy of music disappeared, and the panic of not being able to use a telephone to contact 911 to get aid for a loved one. They will talk about their fears and the reason they procrastinated to get a cochlear implant and the reasons they moved forward, how receiving a cochlear implant changed their lives and the lives of those who surround them. You will meet audiologists and surgeons and those who support the deaf and hard of hearing communities. Welcome to Cochlear Implant Basics. Reminder, Cochlear Implant Basics is not offering medical advice. Please consult your own healthcare provider.

Richard:

Finding out your child has a hearing loss can create a sense of total panic. What did we do wrong? How did we miss it? But after the panic subsides, the next question is, how do we deal with the situation? My parents must have gone through the same scenario, but they are no longer around for me to interview them. Fortunately, Sarah Simmons Trull agreed to talk about her and her husband’s experience when they discovered their two year old son had a severe hearing loss. This interview gives us the opportunity to understand the hearing loss from the parents’ point of view and how Sarah and her husband were able to deal with it.

Richard:

Today, we’re talking to Sarah Simmons about her child, who is a pediatric cochlear implant recipient. I just wanted to first ask you your name, the date, and where you are.

Sarah Simmons Trull:

My name is Sarah Trull, I am in Dallas, Texas, and it is February 12th today.

Richard:

Tell me a little bit about your child’s hearing loss, how you discovered it. How old was your child at the time?

Sarah Simmons Trull:

Yeah. He was late diagnosed when we found out. He was two and a half. We knew that there was something going on because he had a few words at one and then lost them, wasn’t talking anymore, and so we had a sedated ABR that he had bilateral loss. One ear was worse than the other, and we went through genetics and found out that he has Pendred syndrome. My husband and I both carry the recessive gene, so we had no family history of hearing loss at all, and really no idea what to do initially and how to help him, so it was a journey for sure.

Richard:

Let me ask you. This is very important. What did you notice about his behavior at the time that made you suspicious? Was there a day, a moment, something happened?

Sarah Simmons Trull:

He was so observant to visual stimulus that he would respond to our voices, we thought, but we didn’t find out until he was in a preschool or a mother’s day out program, and they actually said, “Do you think that he is not hearing well?” Later, we found out, too, with Pendred, he had enlarged vestibular aqueducts and a slight Mondini, so it can fluctuate, hearing can fluctuate. It’s also progressive. I think, just him not talking was really our red flag.

Richard:

Okay. Now, you received the hint from the preschool. You and your husband, what were the first reaction you had?

Sarah Simmons Trull:

We wanted to find out why he wasn’t meeting those speech and language milestones. When it was finally diagnosed, I think I was relieved because I knew, “Okay, now we kind of know what to do as far as we can start helping him. We know the cause of why he’s not talking, why he isn’t progressing,” but my husband was devastated.

Richard:

Your husband. What about you?

Sarah Simmons Trull:

I was actually glad to know what it was, to know like, “Oh, this is the cause, so now we can start working on other things to help him.”

Richard:

What steps did you take at that point to help him?

Sarah Simmons Trull:

Everything was new to us and I think, now even working as a professional, because I actually went back to school after going on this journey with him, I’m a speech pathologist now. I think it’s really hard to navigate, initially. It’s a whole new world. There’s all this language that you don’t really understand, a lot of misinformation, a lot of really strong opinions about communication options. It’s just really hard to navigate as a parent.

Richard:

Did you decide to get a cochlear implant at the time or were you looking for other options? How did you make a decision?

Sarah Simmons Trull:

We weren’t sure. He had hearing aids a little bit, but he wasn’t really benefiting from them due to his degree of hearing loss. We wanted to make the right decision and it’s hard, when have a small child, to put them through surgery. But I think my husband and I both agreed that it was the best option for him.

Richard:

Some parents, I see it on social media, when they discover the child is a candidate for a cochlear implant, a lot of discussion comes out, “Well, you shouldn’t be making the decision for your child.” There’s a lot of controversy in that area. Tell me how you felt about that.

Sarah Simmons Trull:

I saw some of that and I wanted to learn more about why that was said. But I think, for me, from looking at the research, we don’t get that choice. There’s a critical window for him. Children who are prelingually deaf, there’s a window for auditory development and language development. Even if I wanted to give him that choice, that wasn’t really an option. I guess, for us, we thought we’re going to provide him with this, and if one day he chooses he doesn’t want to hear, that’s fine. He can have that choice and take them off. He doesn’t hear when he takes them off, he doesn’t hear anything, so I guess it’s something where he could make that choice later. But if he wanted to get an implant later and he didn’t have language, he wouldn’t be able to do that.

Richard:

Yeah, absolutely does make sense. I’ll let the controversy roll on elsewhere, but I wanted to know your side of it.

Sarah Simmons Trull:

Yeah.

Richard:

He was two and a half when you found out he had a problem. How old was he when he got the cochlear implant?

Sarah Simmons Trull:

I was pregnant with my second child, so we wanted to hurry it up, the process, so we actually even got him scheduled sooner, so he got it when he was two years nine months, is when he had his surgery.

Richard:

Very young. Did he do bilateral or single at the time?

Sarah Simmons Trull:

Bilateral [crosstalk 00:07:58].

Richard:

He did bilateral. The operation was done in Dallas, or where were you having it done?

Sarah Simmons Trull:

It was in Dallas at Children’s Medical Center with Dr. Brian Isaacson through the Callier Cochlear Implant program.

Richard:

So he came out of surgery and you said to yourself, what?

Sarah Simmons Trull:

It was super hard to put your child through surgery, is a hard decision, but he did so well. He was up and trying to play right as we left. It really wasn’t bad. It wasn’t bad.

Richard:

I’d like to take you back one step. You met with the surgeon before surgery. What were the questions you asked and how did you feel about the answers you were getting?

Sarah Simmons Trull:

I think one thing that I had read that was a concern is, because he did have a little bit of residual hearing, is if he would still have that. There is a lot of misinformation out there, unfortunately. I think I was reading a book one time and it said it’s a one-shot, so if it doesn’t work the first time you can’t redo the surgery, which is not true, and things like that and just different outcomes. I did ask him about that. We didn’t know which one to choose. There were three companies at the time. I think there are still three companies, cochlear implant manufacturers. That was a huge decision. We wanted to make the right decision for that, too, but I think, because of my son’s anatomy, he was only able to choose from two different companies.

Richard:

Which one did he choose?

Sarah Simmons Trull:

Cochlear.

Richard:

Now, tell me about surgery day. You took him to the hospital that day, your heart’s in your mouth, and he came out of surgery and then what?

Sarah Simmons Trull:

It was hard. It was great because he went, at the time, too, we actually transitioned him to a deaf preschool for kiddos who are looking at cochlear implants, are thinking about wanting to develop oral language. His teacher came by, his speech therapist came by, so that was nice. We had a great community already being in that world such a short time. I think we were excited, but scared.

Richard:

That’s natural. Now, did he continue with the deaf school or is he just didn’t know?

Sarah Simmons Trull:

He did for a few months, but then we decided to put him in a mainstream kindergarten classroom, and now he’s 10 and he’s in fourth grade and mainstreamed fully.

Richard:

Fully mainstream. And he’s happy?

Sarah Simmons Trull:

He is. Yeah. There are still some challenges for him with listening. The teacher wears an FM so he can hear better, but he’s such a smart kiddo. He advocates for himself in the classroom, which is great.

Richard:

Can you talk about some of the challenges, more of the challenges he had? I’m sure people would like to know more about that.

Sarah Simmons Trull:

Absolutely. I think the main thing for a kiddo that’s hearing impaired and who hears with cochlear implants, the hearing is different than the way a hearing person hears. Being able to hear in a noisy classroom with… Kids are loud, so it’s very noisy and a lot of classrooms are not set up acoustically to make the environment where kids can hear instruction. We asked our school district to provide an FM system to where the teacher wears a mic that goes directly into his processor so he can hear the teacher as if she was standing next to him. That was really a big thing for us.

Sarah Simmons Trull:

Also, vocabulary is hard for him because he has to have more exposure to it than a typical hearing kid. He misses certain things sometimes just from not being able to hear people talking over here or things that are incidental learning opportunities, I guess, also when he was younger. But he does a great job of asking questions and, if there is a communication breakdown, trying to repair that, even with him, because his speech has come a long way, but sometimes we have to remind him, “Oh, can you tell me again or can you say it a different way?” Or, “That wasn’t clear, can you repeat that?” And he does those things.

Richard:

I want to get back to speech therapy in a second, but I want to also ask you, because I mentor people in 24 time zones, and there are so many different cultural aspects about getting a cochlear implant that some parents won’t do it because they’re afraid their child is going to stand out. In fact, I mentored one family in Ireland where the husband needed the CI, and he didn’t want to do it because his child would be bullied that the father had it. My question to you is, culturally, what’s going on? Do the children accept it? Does he have to fend for himself? Is he bullied? What goes on at that point?

Sarah Simmons Trull:

When he was young, kids would notice it, and kids are cruel sometimes and they just say whatever, they don’t have a filter. When kids would point it out, I would say, “Oh, isn’t that cool? That helps him hear.” And kind of explain it to the other kids. It’s cool because I didn’t realize that I was modeling that for him, but I’ve heard him tell other kids, “Yeah, God gave me this implant so that I could hear.” He was just like, “Yeah, this is so I can hear.” Like I wear my glasses so I can see.

Sarah Simmons Trull:

I think his perspective of it is great, and so other kids notice that, too. It’s not a big deal to him. That’s just something that may be different than the way other kids hear, but it’s not a big issue. He’s very charismatic and has such a great personality, I think. He does really well. Because we worried about that for sure, about bullying. When a child has something that’s different from other kids, you worry that, “Oh, that could be a target.” But I think I’ve been really impressed with the way he’s handled that.

Richard:

I now want to go to speech therapy because that’s your vocation. Tell me a little bit about did he need speech therapy once he got hearing? Tell me what happened at that point?

Sarah Simmons Trull:

He was late-diagnosed, didn’t start talking until he was four and a half, and we did auditory-verbal approach. We had a great speech therapist that really helped him develop listening skills first before speech. I think that’s really helped him now just doing that oral rehab. But he still is in speech at school. I work with him some at home, too. He’ll probably need that for a while. I think if he would have been identified earlier, I wonder if he wouldn’t have needed that as much, just because he would have had those early auditory experiences.

Richard:

It is water under the bridge now. We understand that. But one of the things I’m trying to make parents aware of, the earlier the better, if they’re going to get speech properly, that’s fine. I think you’ve covered a lot, but I know you probably have something you’d like to share with parents who are in the same situation you’re in with your son. Would you like to tell us a little bit more?

Sarah Simmons Trull:

I think what you said is spot on. The earlier, the better. Even as a clinician, as a speech pathologist, I have a couple of kiddos on my caseload and I used to mentor for Cochlear Americas, too. Parents would feel pressure. I want to make the right decision and there’s this sense of urgency. Then I’ve heard other professionals say, “Oh, take your time. You don’t have to make a decision today.” But knowing what I know now as a parent and a professional, I would say, as soon as you can do it, if it’s the right option for you and your family, go ahead and do it. You can’t get that time back.

Sarah Simmons Trull:

The brain is set up to receive that auditory information because of the high plasticity. You can’t get those years back. In retrospect, if we would’ve known, we would have not hesitated. At the time, it was a very hard decision, but now it was the best decision that I think we could have made for him, or have ever made for him. It’s been such a blessing to him and his life, thinking about how creative he is, even with the way he communicates with friends and for him to not have that ability to communicate with peers, we’re so thankful that we were given the right information for us as a family and had those opportunities to get the cochlear implant and pursue it.

Richard:

I think that perspective is going to be extremely important for people who come on to the website for the first time looking for information, because it’s so confusing and it’s such a major decision to make. I really do appreciate your sharing this with us and I hope sometime to do an interview with you about speech therapy, per se, as well, but that’s a different topic. I want to thank you so much for your time today.

Sarah Simmons Trull:

Thank you so much. Thank you for having me.