This was our child’s response to the first time hearing with hearing aids.
We found out Sayge, our third child, most likely had hearing loss when she was 2 days old. She did not pass the newborn hearing screening test. While doctors assured us that it was most likely fluid in her ears that was causing the failed screening, we knew that it was extremely likely. That is because Sayge’s older brother, Ayden, has hearing loss. His too was detected at birth. Both children had no other signs or reasons that might have caused the hearing loss.
Complexity of Hearing
After a failed newborn hearing screening test, we were referred to our ENT and Audiologist for further testing. After all the testing was completed, they confirmed Sayge’s hearing loss and it is almost exactly like Ayden’s -permanent mild to moderate hearing loss in both ears. Hearing loss is more complex than a binary -something you have (hearing) or don’t have (complete deafness). The variations range all over the place depending on frequency and differs from person to person. Often times when people see Ayden and Sayge they assume they are completely deaf. Before Ayden, I had absolutely no idea how the hearing loss/deaf world worked and honestly, I am still learning a ton. But, here are some basics to help give some clarity.
Hearing Loss Basics
Hearing loss is measured by combing of hearing levels and frequency of sound. The degree of loss is often placed into: mild, moderate, severe, to profound classes based on the disables one can hear. Profound hearing loss is considered Deaf. An audiogram is what Audiologist use to chart the hearing loss and to represent the complexity of sound.
For both Ayden and Sayge, their hearing loss ranges from mild in the lower sounds and dips to moderate in the higher sounds. Normal hearing is anything 20 decibels and lower. A mild loss typically ranges from 20 – 40, moderate from 40 – 60, severe 70 – 80, and profound is anything above 90.
Hearing tests are performed at least once a year starting as early as 6 months., However, it was the ABR test that originally determine the hearing loss. This detailed test collects data of vibrations that come from the ear canal. The ABR test is pretty accurate in the results, but it is considered a “prediction” of what a person’s hearing loss might be. They can not test every single frequency and the audiologist has to interpret the results. This adds the possibility of minor human error. Because hearing is so complex and there are so many different frequencies, it can take years to begin to get an exact idea of the extent of hearing loss present.
For my children, while they do have a lot of natural hearing, wearing hearing aids gives them access to almost all sounds. Mild hearing loss, which might not sound as “bad” is still a significant loss. There are many sounds that fall into that range that are hard to access without hearing aids.
Curious about cochlear implants? They are only for individuals that have severe to profound hearing loss and who don’t respond well with hearing aids. My children do not qualify because of the range of their hearing loss and how great they have responded with hearing aids. If for some reason their hearing is progressive; gets worse, and hearing aids no longer are effective, then we would look into cochlear implants as an option.
Newborn Hearing Screening
How did we find out so early? At birth, the hospital does a newborn hearing test on every child. The test measures the brain’s response to specific frequencies. Meaning, it is not a behavior test. Further testing is done to determine the extent and kind of hearing loss and if there are other problems occurring. The newborn screening is relatively new. Before the newborn screening was universal, many children went years without being diagnosed. Each year, even month, can impact the brains ability to process sound and create speech. With early intervention, child can grow into successful individuals. The degree of hearing loss my children have, without the newborn hearing screening, we wouldn’t have noticed right away and would have not have gotten the early intervention.
Isolated Hearing Loss
Ayden and Sayge have “isolated” hearing loss, which means that no other body part is impacted or connected with another disease or disability. Both children are incredibly healthy. Their cognitive and physical development are not impacted. Even without hearing aids, Sayge smiles, laughs and does everything she can to connect with us. It is fascinating to see her naturally compensate for her lack of hearing by watching our every move. Ayden, being further down the road in his hearing loss experience, loves to show off his physical abilities. He was walking at 10 months, climbed everything he could by 1, and now at 4 has mastered the monkey bars. His speech improves everyday and he loves learning all his letter sounds and is getting excited to learn to read.
Sign Language is another topic we get asked a lot about from friends and family. This is a topic that I am still trying to understand and figure out what I would like to do for my kids. I love ASL and all the benefits that it offers. However, my kids fall in the strange world: not fully hearing, but not deaf. Therefore, with the use of their Phonak Sky V hearing aids they can very successfully learn to speak and communicate. In other words, they can be completely integrated into a hearing world successfully with the use of their hearing aids. All of my children, including my fully hearing son, have used baby sign language to help communication as they were learning to talk. They used signs like: more, please, thank you, help, want, milk, all done. We continue to teach them how to sign basic words and letter and enjoy integrating them into our daily routine.
Hearing Aids and Insurance
A sad fact about hearing aids is that most states do not cover hearing aids in their insurance plans. In fact, only 20 states offer state mandated hearing aid coverage. Out of those states, only one – Colorado – covers in full. All other states cover a portion of the hear aid cost. Check out what your state covers here. Illinois is one of those states. Thankfully, they also happen to have a great Early Intervention Program that funded both Ayden and Sayge with their first pair of aids and offer subsidized ongoing therapy. However, after the age of three, we are on our own and have to pay out of pocket for both hearing aids, ear molds, and batteries. To give an idea of the cost, for the average set of hearing aids, they are about $2500 per ear. And any extra devices like a Roger system (which adds amazing extra benefits) the cost is even more!
The Roger System
The Roger FM system is an incredible device that has helped us! The Roger system works similar to a one way walkie talkie. A person – dad, mom, or teacher wears the Roger device that has a microphone attached. When they speak, the microphone sends the sound directly to the two receivers that are attached to the back of the hearing aids. This system is typically used in the classroom and can be provided by most school systems, however, it is rare to see one at home. Mostly, because the system costs about $3,000.
Educate and Advocate
We are so incredibly obsessed with this little one and feel like she is just a constant gift from God. Thanks for celebrating our amazing daughter with us. We desire to help educate others about what it is like for those living with hearing loss. We also want to help bring hope to other families that have had a similar diagnosis. Please feel free to comment or message me questions. I am happy to share and look forward to connecting.
2 Replies to “First Time Baby Hears With Hearing Aids”
I came across your site on Instagram which led me here. My daughter Grace was diagnosed with moderate/severe hearing loss in both ears at 8 weeks old (last week). She had ear impressions taken for hearing aids this past week as soon as they had results from further testing. The initial emotional rollercoaster hasn’t been easy but I’m trying my best to stay as positive as possible and seeing your website has really given me more confidence with raising a child with hearing loss. I feel so far from understanding it all despite however many websites I’ve been on, but feel that maybe it’s just going to be a matter of taking each day as they come and doing whatever I can to support her as she grows. Please if you can share with me any helpful ideas on things you have found made you and your children’s lives better/easier Id love for you to share them with me. I worry about hearing aids and if they’ll be uncomfortable, stay on (on a baby!), and how to deal with feedback or what causes it and what should I do to help prevent it from happening so it doesn’t hurt her ears… I really hope you get this message as I’d love to connect.
I am so glad that you found my page! The information at first is completely overwhelming, I totally feel you there! It sounds like you are doing exactly what your sweet Grace needs – getting her hearing aids, learning, and offering her all your heart and support. Having hearing aids this young is amazing! I wrote a post on advice I wish I had when I found out about my son’s hearing loss almost 5 years ago. I am not sure if you saw that one – http://www.melissahyder.com/hearing-loss-advice.
It sounds like you are already doing a great job supporting her. She is lucky to have you as a momma. As far as the practicality of hearing aids, my best advice is do the best you can. I worked closely with our Early Intervention Developmental therapist. She walked me through the process and offered suggestions when something wasn’t working right. We tried a number of hats, headbands, clips, and more. What worked with my son didn’t work as well with my daughter.
I don’t want to overwhelm you, so take or leave this information. 🙂
For my son, we used a clip method. This is because he did a great job at not pulling them out. However, he didn’t do a great job at not losing them! He liked to hide them on us, or just throw them off when the battery died. So, the clip kept them together. I didn’t use the clip that we were given from Phonak, where we got his hearing aids from. The Phonak clip attaches to the actual hearing aid. I felt like this caused them to flop off the back of the ear. I used a different clip that attached to the hook part of the hearing aid. It kept the hearing aids together and didn’t cause them to come off his ears. I got this from our audiologist. If I can find our old one, I’ll take a picture and post it to give you an idea of what I mean.
Sidetone, I wrote an article about hearing aid issues! – http://www.hearinglikeme.com/5-common-hearing-aid-challenges-for-kids-and-how-to-solve-them/. This site is a great resource.
My daughter has been different from my son. She was great with the hearing aids at first. Using headbands were great. I got them from target and Walmart. But I often had to tie knots in the back to help them fit and be snug enough to hold the hearing aids in and keep little fingers out. I bought a number of them to see what worked the best. I liked the headbands that were thicker to cover the entire hearing aid. This helped to keep her from grabbing them. At about 7 months, she started to constantly pulling them out. I think she liked the material and wanted to suck on them. The problem was that the pulling was causing the tubbing to pull from the ear mold. So we had to get a tad more feisty with her. We used pilot hats and watched her constantly when her hearing aids were in. Even those she could still get to them. My goal during this hard time was simply to keep at it everyday. Sometimes she had them in for an hour and sometimes it was 10 minutes. I knew this was a phase and eventually it would click. Now that 9 months, she has them in most the day again. She still pulls at them a lot, but after awhile she stops.
For my son, by the age of 3 he was able to put them in and take them out himself and we rarely have issues with losing them. He loves having them in all the time!
In the end, my favorite to hold hearing aids in and keeping little hands out has been the pilot hats. When the hat is on, I don’t feel nervous having other people watch her, or put her in the nursery at church, etc. It was the best overall way to keep them in.
My advice is to try a few different options and see what works best for you both.
Here are a few links to check out:
Pilot Hats – They can be custom made and have mesh sides:
Aivtalk sold organic cotton pilot hat from Amazon
I found this on Amazon and just bought one. I’ll have to let you know how it turns out! : )
Hearing Aid Headbands
This is a design that attaches the hearing aid to the headband. I have not used this one, but I can imagine it would be a great option as it doesn’t cause the hearing aid to be pressed against the head. You can check them out on Instagram.
I hope this is helpful! Please feel free to message me any time with questions and concerns, or just a safe place to share your heart. You are not alone!