He Was a Visual Baby
At three months I decided he was deaf. He didn’t do things like a hearing child. So normal hearing babies want to be coddled, they want you to rock them and do things like that for them, but Troy, when you tried to coddle them, he refuses, always flipping himself to see outward. He would not let you hold him too close to you, I guess he couldn’t see. He was a visual baby. Even if you were just sitting around like we are talking, you couldn’t rock him like that, you’d have to hold him in front of you so he could see. I noticed that he would not allow you to coddle him. You could only coddle him if you could sit him so that he could see. His grandfather was living in the house with us at the time, so he said “why don’t you make some noise or something to check and see if he can hear?” You know, like drop a quarter or something like that. He decided he could hear, well it turned out he could hear high pitched sounds. Then I used to get him up at night to make sure he’s dry and stuff like that. I’d try to play with him and sing stuff, but he wasn’t interested. He wasn’t interested at all. But, if you put the TV on, he’d roll right out of your hand to turn over and watch the TV. He would, he’d just flip himself.


A New Baby in a New World
Before we left for China I had booked an appointment with early intervention, so that when I brought her home they could do a full assessment. While we were in China my husband, who is not a special educator, and just a dad, kept saying “I don’t think she’s hearing us.” Because I was an educator I thought it was just a bilingual issue, we’re speaking English, she’s used to Chinese. I was just so thrilled to have her. Being in China for a month is really a totally incredible experience. It was a little overwhelming. I wasn’t thinking she didn’t hear. She was responding to commands in English, but we gesture a lot anyways. She’s very good at compensating. When we brought her home she wasn’t responding. She was responding to us talking to her, smiling and all that, but she’s a new baby in a new world. But I noticed she never heard the dogs barking. If I left the room she would cry and she could not find me in the house. We don’t live in a big house. She would just stand there screaming and crying. I would call her if I was in the bathroom or putting laundry away, I would call to her and even though she doesn’t know the English, she hears my voice she could come. She never could find me. I brought her to have her hearing tested and the person testing, the audiologist, I wasn’t happy with the way she tested her. They said in another three or four weeks you can see the doctor. I’m not waiting. I called one of my colleagues and said “who do you recommend I bring her to?” We went to somebody local that she trusted. I said “It’s probably me, she’s had a history of ear infections” and she said “let’s do the sound field test” and she did it and that’s when we found out…We knew within three weeks of having her home that she was probably deaf. It was confirmed two weeks later with another test under sedation.


“He’ll Grow Into It”
When Addison was born he passed the newborn screening and then maybe when he got to be one, I noticed that he wasn’t using simple words. He was my first child and I’m an only child so I never noticed that anything was a big deal. I’d take him to the doctor and say “Is he talking like he should?” and they’d say “He’s a boy. He’ll grow into it.” As we went on I didn’t think that he was communicating like other children in a play group his age. I ended up switching doctors and within a week we were sent to a pediatric hospital and he was diagnosed a hearing loss. He has a moderate hearing loss and now they think it’s moderate and mixed. It’s sensorineural and conductive.


Mondini Dysplasia
She has a severe loss in her right ear and a profound loss in her left ear. There were different points early in her infancy when I wondered if she had any kind of problem. She was the third child and the classic thing the pediatrician said is that they don’t acquire language as quickly. A couple of times I brought it up and he would say “She’s making a lot of different sounds so that’s ok as long as they’re experimenting.” I don’t think I realized that even hearing impaired children experiment with their voice. In hindsight, I realize that when she would experiment with her voice it was really loud. I could remember at 4 months old she would wake up in the morning and she would be yelling. She wasn’t unhappy, she was just playing. I would have to put her in the crib on the first floor so the rest of us could sleep because it wasn’t time to get up. I never put together that that was how loud she had to yell to hear herself. When Stephanie was nine months old she had been sitting in the kitchen on the other side of the island with her back to me and I was calling her. I called her and I called her and she didn’t turn around. Some books say that by nine months they should know their name. I called my husband who worked upstairs. He came down and did the same thing. He got out the pots and pans and started clanging the pots and pans and she turned around. We weren’t very educated about hearing loss. We thought she could hear and was just ignoring us. I did call the pediatrician and he said to go ahead and have a hearing test. I scheduled something and she got the one ear infection she’s ever had and I had to delay it. It was two days before her first birthday when she was diagnosed. I went to a pediatric hospital downtown and after the behavioral assessment they told me she was deaf. They needed to do an ABR and I asked them to accommodate us and give her one that day, and they did. I called my husband to tell him and he immediately came, as did my in laws. My husband has never missed a hearing test since. She has a progressive hearing loss. They did an ABR that day. They had to sedate her for an ABR and it was imperfect. They had some sense of how bad it was but they were going to repeat it a couple weeks later. She has what is called Mondini dysplasia. She has the wrong number of turns in her cochlea. Once she was diagnosed she needed to have a standard test to understand why she was deaf. On the CT scan they could see the abnormality.


She Fooled Them… Eight Times
I’d say around eighteen months I noticed that she was pointing to things and she was making sounds that didn’t make any sense, but clearly in her mind they made sense. At that point, I got my pediatrician involved. We went through early intervention. They assessed her, didn’t find a hearing loss. She would come to me and put her hands on my face and say “do this for yes and this for no,” and she would scream a question at me. It was a long road. We went back in a year, she had eight audiology tests and she actually fooled them. It was not at Children’s. We went through a lot. We had an ENT tell me that I was crazy and that she was crazy. We ended up getting a CT and confirmed this diagnosis. So she didn’t have hearing aids until August before she went to kindergarten. It was extremely stressful. It was so hard to watch your child go through something and not really know what was going on and taking her and trusting people to tell you what the right thing was. It was emotional to find out that I should have been doing this for her three years ago. It was really hard. You feel like you’d let her down. I tried to do the best that I could, but I will remember the day that we took her and they put those hearing aids in her ears and turned them on and she was just like “Wow, What’s that? What’s this? I can hear what you’re saying!”


Unexpected Diagnosis
Evan was diagnosed late. There were no newborn screenings. I’m also a special needs teacher. People thought I was crazy when I said “I don’t think he can hear.” There were a few words and sounds that he appeared to say, but I don’t know if he truly did say them or if that was just what we wanted to hear so we thought he said them. So, it is your typical story. We were in the backyard at my mother’s house, and the dog in the next yard barked, and everyone turned and Evan just sat there in the sandbox. My mother said, “Oh, maybe you are right.” So he went for an audiological evaluation locally, at the local hospital in town, and I didn’t even take the day off because I was in denial so I didn’t go. And my husband called me at work and said, “I’m telling you, I had to put on headphones and Evan didn’t even move.” Then he had the ABR sleep test done. They explained to us to the limits of the equipment that there was no response to sound. From there, I had heard about cochlear implants. I actually had a child with hearing loss in my class and her mom used to give me magazines. I remembered reading about this device and it, we just went from there. I called the doctor and we got hooked up with Children’s.


We Felt Kind of Suspicious
I think within 9 months we found out about his deafness. Actually, when I came home one day my wife told me that when she would call him he would not respond. He was watching TV and she said, “Come with me” and she clapped behind his back. He didn’t turn his head. That confirmed our suspicions. We took him to the hospital in Sudan and he got the hearing tests. The doctors told us there was some dirt behind his ear drum and they needed to remove it. They tried hearing aids on him. After that I decided to come over to the United States just to make sure that he was okay, and clarify what kind of diagnosis he had, as well as find out the best solutions.


She Didn’t Even Flinch
The newborn screening happened about a year after she was born. So she didn’t have a newborn screening. So for us, we didn’t know she was hearing impaired right away. It was over time. I’ll never forget it: when she was ten months old, I had brought the boys to a birthday party, and when we came home, we barged through the door, we were so loud like “Oh, we’re home!” Jessica was sitting right there and she didn’t even flinch, nothing. So I can just remember, it was suddenly, I knew at that moment that it was a problem. So that’s kind of the start of everything, bringing her to the doctor’s and finding out what happened.


I Had to Follow My Intuition
When Cristina was a toddler, she was a very loving little girl, but she would always be throwing tantrums. I remember when Cristina was 2 yrs old and couldn’t talk, I thought “there’s something wrong.” I went to her pediatrician and I said “there’s something wrong, she is always throwing tantrums and she cannot talk to me besides saying `mom’ or `dad’.” I asked him to please do some testing, so he sent her to a neurologist. They said that she might have attention deficit, but that it was difficult to be certain because she was so young. Still there was something more and I went back again and I said, “There is something wrong. Can you test her?” It never crossed my mind that it would be her deafness, or her hearing, but I knew there was something off. I was very upset. From there I took her to early intervention. They paid attention. They thought that she was behind in her speech of course, so they were working with her. In the mean time, I heard about the pre school clinic and we got on the waiting list. When they saw her, they did all kinds of testing: they checked her vision, her hearing, her developmental level, a psychological evaluation, and so on. I remember one of the clinicians, who has been great through all the years, she sat me and my husband at the time down, and told us that she was deaf. They found that she had a sensorineural hearing loss, moderate to severe. From there everybody gathered, and we talked and realized that she wasn’t so much hyperactive, she was not hearing us. So, of course she was acting up! That’s how everything began. It was really hard as a mom, I think it was probably my worst day, because I looked at her and I knew there was something wrong, but I didn’t know what and suddenly I had an answer.


It Was Discovered Early
Chris has a mild to moderately severe bilateral sensorineural hearing loss. It was discovered through newborn hearing screenings in Providence, Rhode Island, which was the first state to do newborn hearing screenings. He is very fortunate to be part of that program because they discovered his hearing loss at 12 days. He had a traumatic birth situation, so we’re not sure if it was because he was in distress before he was born due to lack of oxygen and very low APGAR scores. Also because of his traumatic c section delivery, he developed a level two intraventricular hemorrhage which caused seizures, apnea spells, and other nervous system problems. We don’t know whether his hearing loss was because of the brain bleed or because of the trauma before his birth, but it is very likely that it is one or the other. Fortunately it was discovered early and he got his first hearing aids at seven months of age.


He Was Diagnosed At Birth
He was diagnosed at birth. He was born and on the second day after he was born they tested him and that came back as a referral. They referred us for a diagnostic audiological evaluation. Two weeks later we confirmed the hearing loss.


An Aunt’s Story
Chris was born prematurely and the hearing loss was discovered almost immediately. There was this period when he was first born when “Is this child going to be alright?” and “What does this mean?” He had regular testing and his mom has a great interest in understanding all these processes. She immediately learned everything about everything and I think that helped a lot. She interacted a lot with the professionals that would help him. She kept a level head about it. As he gets older, sometimes we forget he has a hearing loss.