‘When should we worry?’ The doctor said, ‘Now.’ The next thing I remember is crying in my husband’s arms.’: Mom of son with hearing loss, Usher Syndrome shares journey

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“We ended up getting genetic testing done on our son, Sawyer, because he failed his newborn hearing screening. ‘It’s probably nothing,’ the nurse reassured. ‘It could just be fluid. He should go for a follow-up in a week.’

Well, it wasn’t just fluid, because one week later, he failed another test at the ENT. At this point, I asked the doctor when we should start to worry, and he said we should worry now. And I did.

A man in a surgical mask holds a swaddled baby boy
Courtesy of Kloey Theriot

A few weeks later we found ourselves in the audiology department at the children’s hospital. We were worried, of course, but we were also eating up those newborn smells and we were hopeful it was all just a fluke. They had to do something called an ABR, which stands for auditory brainstem response, and it requires the child to be hooked up to all these wires all over their head.

A little boy with wires hooked up to his head at a doctor's office
Courtesy of Kloey Theriot

It wasn’t too far into the test before the audiologist said, ‘We aren’t finished yet, but I can tell you it does look like he has some sort of hearing impairment, okay? We’ll know more once we are done.’ I just nodded, in shock, and I honestly can’t remember a single thing that was said the rest of the appointment.

The next thing I remember is my husband holding me in the parking lot of the hospital as I cried in his arms. As a parent, you want to do everything in your power to fix every single thing ailing your children. This was one thing I could not fix. I felt a spectrum of emotions. I felt guilty. I thought about everything I could possibly have done to cause this. I felt scared. Scared life wouldn’t always be smooth sailing for my sweet boy. I felt angry.

A little boy sitting outside wearing a white shirt
Courtesy of Kloey Theriot
A mother holds her baby boy over her head and kisses him
Courtesy of Kloey Theriot

Sawyer was diagnosed with bilateral moderate-to-severe sensorineural hearing loss, which is caused by damage in the inner ear and is irreversible. They explained to us we might not have realized he wasn’t hearing us because he was still responding to very loud noises. Before he was diagnosed, I would try to ease my mind because he would startle when the dog barked, and I remember thinking, ‘Oh, good, he heard that. He’s hearing fine.’ They said his type of hearing loss causes him to not hear soft sounds. Like people talking. Like my voice. It was hard to know he couldn’t hear soft music, couldn’t quite hear me tell him I love him, and couldn’t hear me laugh at his every move and sound.

He was fitted for hearing aids a couple of weeks later, and he was officially aided when he was two months old. We were heartbroken, but we were also optimistic he would not have any speech delays. He started speech therapy at around 5 months old and surprised everyone with how well he adapted to everything. His therapist always marveled at how smart he was at such a young age and even said he probably wouldn’t qualify for therapy if it weren’t for his hearing loss.

A little boy getting hearing aids at the doctor
Courtesy of Kloey Theriot
A little boy wearing hearing aids and a sweatshirt
Courtesy of Kloey Theriot

Listening to Sawyer learn to speak felt like we were doing everything right. Seeing him play and repeat sounds back to the therapist for the first time made us so proud. I would report back to family members when he would have an especially good session, and the therapist would always reassure me he was still on track even when he wouldn’t have a great session. Sawyer’s first words were that much more special because there was a time when we didn’t exactly know what those would look like.

A little boy sits on his father's lap at a doctor's appointment
Courtesy of Kloey Theriot
A little boy playing with a toy at a doctor's appointment
Courtesy of Kloey Theriot
A little boy and his parents blowing out birthday candles
Courtesy of Kloey Theriot

We monitored his development with another weekly provider, did all of the proper early intervention, and connected with so many people going through similar situations. Immediately after Sawyer was diagnosed with hearing loss, we were overwhelmed with support from the Deaf and hearing-impaired community. I would receive so many calls and texts from different organizations and parent support groups, so if I ever had questions, I was covered right away. It was heartwarming to know I wasn’t alone in this journey. I would also receive messages from parents going through similar situations, and it helped me to be able to help them and reassure them. I took to writing and started a blog to spread awareness and channel my grief. Little did I know that the thing I was advocating for would shift to include something else entirely.

At first, life with a baby who wears hearing aids was extremely overwhelming. For the first 8 or so months, he was growing so fast we would have to go back to his audiologist to get impressions taken of his ears for new molds (the part that goes in his ear and connects to the actual hearing aid) about every two weeks. He would constantly rip them out and take them apart. It was very hard to keep them in for an extended period of time. Sometimes, we would just give up and leave them out. Then I would feel guilty about that, too.

One time, my husband texted me at work to call him ASAP. I called him, and he was panicked, trying to find a piece of the hearing aid Sawyer had just ripped apart. I was just about to tell him to go to the ER (thinking he had surely shoved it in his mouth) when he found it while we were on the phone together. Needless to say, it kept us on our toes for a while. Life got SO much easier when we got him some pilot caps, which button under his chin. Until he learned to just reach in the cap to take it out that way.

A little boy sitting on his parent's lap at a doctor's appointment
Courtesy of Kloey Theriot
A little boy wearing a cap and a red striped shirt looks out a window
Courtesy of Kloey Theriot

As a result of the hearing loss, his ENT suggested we do a complete workup of tests to ensure the hearing loss isn’t associated with something else. She was pretty sure it would be genetic but wanted to rule out a syndrome that could potentially affect another part of his body. After finally getting the hang of this hearing aid thing, we then had to go to appointments for a CT scan, physical exam, and EKG. Finally, after all of that came back with good results, we were authorized by our insurance to move forward with genetic testing when he was almost 1 and a half years old. Sawyer was sick of the doctor and sick of being poked and prodded, but we were looking forward to finally having some stability once all this testing was over.

The genetic counselor called me when I was at the gym. Children’s Hospital popped up on my phone, and I ran out of my group fitness class to answer the phone call I had been waiting weeks for. After the genetic counselor had introduced herself, she asked me if there was somewhere I could sit down before delivering the diagnosis.

Sawyer has something called Usher Syndrome. It causes hearing loss from birth and vision loss starting in adolescence and progressing through life. Sawyer will lose his vision. That’s all I heard. It’s all I remember. She asked if I need to call someone to come pick me up, and I said no, but I honestly should not have driven home. I couldn’t see through the tears, but, luckily, I made it home safely. My husband was wondering why I was home earlier than usual. I was finally able to get the words out, and that is the first and only time I have ever seen my husband cry. We just cried together for a while and inevitably started to do our research.

A couple and their son stand outside in front of a fence
Courtesy of Kloey Theriot

Usher Syndrome is an autosomal recessive disorder which means my husband and I are both carriers and each of us passed down the gene to Sawyer. Each time we conceive, we have a 25% chance of having a child with Usher Syndrome. There are three types and some subtypes. Sawyer has type 2a. The vision loss is due to a degeneration of the retina as a result of a disease called Retinitis Pigmentosa.

We told our family, and most of them cried with us, but all of them were optimistic and had full faith Sawyer was going to overcome this just as he had everything before it. We had an appointment with the genetic counselor who gave us so much information and resources. It was a lot to take in, but we were just trying to take it one day at a time. I also connected with Usher Syndrome families and organizations. I was able to see older kids with Usher Syndrome and how amazing they are doing. Knowing it wouldn’t actually hold Sawyer back from anything was an incredible thing to learn. My hope is I will be a helpful resource to other people much like myself just like these other people were for me.

A little boy sits in a shallow pool
Courtesy of Kloey Theriot

Prior to finding out Sawyer’s diagnosis, we were trying to conceive baby number 2. Since we do have a 25% of having a child with Usher Syndrome every time we conceive, we had conversations about if we needed to be trying anymore and decided to just take some time to figure everything out first. Little did we know, we were already pregnant with a little baby girl when all of this was going on.

When we found out we were pregnant with our daughter, we were ecstatic, of course. We had just been trying for months, and we wanted her so bad. But with the joy came some clouds of fear. We had a 25% chance of having a child with Usher Syndrome, a 50% chance of having a child that is a carrier, and a 25% chance of neither. On the one hand, we were scared she would have Usher Syndrome, but on the other hand, Sawyer showed us it was something we could all get through gracefully.

The diagnosis and pregnancy were a lot to deal with at the same time, but something happened that gave me peace. I had her name picked out and was set on it until one night, I had a dream in which I said my kids’ names out loud (even though she wasn’t here yet). I said, ‘Sawyer and Olivia.’ It wasn’t a name I had ever even thought about before, but when I said it out loud to my husband, we both just knew it was the one. The name ‘Olivia’ means olive or olive tree which signifies peace.

After that, I was overcome with so much peace and enjoyed my pregnancy every single day, no matter what the outcome was going to be. They offered me prenatal genetic tests, which come with their own risks, and I declined because it wouldn’t have made a difference to us anyway. She arrived and passed her newborn hearing screening. Shortly after that, she passed an ABR with Sawyer’s audiologist. We still got genetic testing done, just to be sure, and it showed while she does not have Usher Syndrome, she is a carrier for it and it will come back into play if she ever wants to start a family of her own.

A couple sit on a park bench with their two young children
Courtesy of Kloey Theriot

These days Sawyer is THRIVING. He is able to tell me when his hearing aid battery is dead. His speech is amazing thanks to his hard work in speech therapy. He’s going to be 4 soon, and he will go back to his vision specialist to make sure he doesn’t have any signs of vision loss yet.

He’ll be starting his first sport this fall—soccer! He’s incredibly handsome—a clone of his dad! He is so smart and so polite. We are beyond blessed to have him in our life. The best big brother, too! It’s incredible to watch how he overcomes his difficulties. He knows when he doesn’t have his hearing aids in, I have to talk loudly directly into his ear, and he pulls me in close to do so. He can read lips really well, but we also sometimes take for granted the hearing aids and great speech. We sometimes forget when they aren’t in, there are certain parts of life he’s missing out on.

A little boy with hearing aids hugs his little sister
Courtesy of Kloey Theriot
A boy and his sister sit in chairs holding popsicles
Courtesy of Kloey Theriot

If it wasn’t for our amazing support system, I wouldn’t have grown and learned so much from all of this. It’s not my story. It’s Sawyer’s. He’s the one living with it. If there’s one thing I’ve found to be undoubtedly true, it’s that kids are so resilient. He’s not broken and doesn’t need to be fixed. He’s not missing anything and there’s nothing lost that warrants grieving. He’s perfect in his own way.

One time, lost in my grief, I ignorantly said, ‘I can’t think of a single thing worse than being deaf and blind.’ How wrong I was to think deafblind people aren’t capable of so much more than that! Sawyer is capable of so much more than that, and he will achieve anything he puts his mind to.

‘Although the world is full of suffering, it is full also of the overcoming of it.’ – Helen Keller”

Parents sit in a field with their young son
Courtesy of Kloey Theriot

This story was submitted to Love What Matters by Kloey Theriot of Berwick, Louisiana. You can follow her journey on Instagram, Facebook, and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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