One year ago today, we learned Lainey had hearing loss. She was exactly six weeks old.
Although it was a blessing how early her hearing loss was detected, the news came with quite a bit of shock. We were suddenly in a world that we knew nothing about. We were very overwhelmed. But we quickly embraced it. It is all well with my soul! My daughter is simply amazing, and I wouldn't change a thing!
Hearing loss is still a pretty unfamiliar world to me though. I still have a lot to learn, and I will, as I go on this journey with Lainey.
This is a long read but I want it documented. As a bonus, I hope it brings awareness to hearing loss. My own misconceptions about hearing loss have been crushed this year. I hope this post can do that for others.
A Cliff Notes version of this post: Lainey has Sensorineural hearing loss (SNHL) of both ears. Sensorineural hearing loss involves damage to the inner ear or the nerve of hearing. Lainey has mild hearing loss in her right ear and mild/moderate hearing loss in her left ear. Genetics was the cause of her hearing loss. Her hearing loss should remain stable but is permanent. Lainey has been wearing hearing aids since she was ten weeks old. The biggest concern regarding Lainey's hearing loss (or any child with hearing loss) is speech development (if she can't hear the word correctly, she won't be able to say it correctly). We are very aware of this, and somewhat expect there to be struggles in the future; however, we have a very capable daughter. We will get through this together!
Her detailed story goes a little something like this:
It started in the hospital when Lainey "referred" (didn't pass) her newborn hearing screening (for both ears). I remember the nurse returning Lainey from the test in the middle of the night. I remember asking her how it went.
"Well actually, she didn't pass".
She was quick to reassure that it could be a lot of different things causing her to refer. She reminded us it is a "screen", not a test, and things like fluid in the ears from a quick delivery, underdeveloped ear canals, or that Lainey wasn't fully asleep could be plausible reasons for the referred result. Since there were so many unknowns, we were told not to worry and to come back in two weeks for the screening again.
Two weeks later, we went back to the Labor & Delivery unit to have the same screening performed. I cuddled Lainey in my arms as different sensors were placed around her body and in her ears. The sensors didn't seem to be sticking very well, and Lainey didn't seem to be in a deep sleep. The nurse performing the screening told us they were having some issues with their equipment the night Lainey got tested. Shortly later, but not with much confidence, the nurse told us Lainey referred. The test results went to Lainey's pediatrician, and he referred us to Children's Hospital of Wisconsin for more testing.
A couple weeks later, on November 20, 2019, we went to the Children's clinic in New Berlin, and an Audiologist performed another newborn hearing screen. Lainey passed in her right ear (but only after the Audiologist ran the test twice) and referred in her left. The Audiologist recommended Lainey get tested again due to the inconsistency of the screening results. She also recommended we see an Ear Nose and Throat (ENT) doctor to evaluate her ears, specifically for fluid in her ear canals.
We got in for a FOURTH newborn hearing screen two days later. We also had a consultation and examination with the ENT doctor. The results: Lainey referred in both ears, and there was no fluid in ears.
Next steps - an auditory brainstem response (ABR) test was to be performed. This was an actual hearing test and would measure how Lainey's hearing nerves and brain responds to sounds. This test was going to give us answers.
And it did.
On December 2, 2019, we went to the Delafield clinic for the ABR test. We met with an amazing Audiologist and began testing. There were a lot of sensors, clips, and a couple earphones. Lainey had to remain asleep during the entire test.
After testing, Lainey's Audiologist reviewed the results with us. The ABR test determined sensory, bilateral hearing loss. She explained that Lainey has mild hearing loss in her right ear and mild/moderate hearing loss in her left ear.
Lainey's Audiologist drew an audiogram of her results and explained what it meant. She said with Lainey's degree of hearing loss, soft and higher pitched sounds may be difficult for her to hear. For example, she may not be able to hear a whisper or water dripping.
She also said that Lainey is at-risk for delays in speech and language development. Without amplification (hearing aids), Lainey may miss significant amounts of speech during language learning periods, may miss significant classroom discussions when she's school aged, and will likely experience increased difficulty discriminating speech in the presence of background noise. She mentioned that Lainey may also miss portions of fast-paced interactions.
And then I remember the Audiologist saying, "so I would recommend hearing aids for both ears."
We were in shock. Absolute shock.
I don't remember or know what I was expecting, but I don't think I was expecting her to say that. In that moment, I broke down in tears in front of her. I remember her handing me a Kleenex box to wipe my tears.
So many fears and worries instantly flooded my mind. So many "what ifs". Looking back, many of my fears and worries stemmed from the unknown and lack of awareness and knowledge around hearing loss in general. We didn't know anything.
Lainey's Audiologist gave us a few minutes alone in her office. When she returned minutes later, we were discussing hearing aid devices, making molds, and picking out the colors of Lainey's inserts.
Making Lainey's first molds - 12/2/2019
Honestly, we hardly had time to process the news we were just given. We were instantly thrown into a whole new world, which we knew nothing about. Thankfully, Lainey's Audiologist helped make some of these tough decisions regarding her new "ears".
I remember picking out her devices. We were offered "skin tone" colors so her ears wouldn't be as noticeable. We went in the opposite direction and selected hot pink. We were all in. We were going to "own it". There was no sense of hiding her ears. It was going to be part of Lainey's life.
I remember a quiet ride home. And more tears. I remember getting home from the appointment and immediately going to social media. I needed resources and connections to this new world. I started searching for other moms with babies that had hearing loss. To my amazement, there was a big community! A big community of supportive, empathetic, and helpful mothers who went through very similar journeys as us. I immediately started connecting and learning.
A difficult part of Lainey's journey is the unknown. Right now, Lainey can't tell us what she is experiencing. What is difficult for her to hear? How can we make things better?
Then there is the unknown about the future. How will her speech and language be affected? Will a noisy classroom make it difficult for Lainey to hear her teacher? Will the sound of whistles in a gym be harsh on her ears? These are things Lainey's Audiologist brought to our attention. They have not left the back of my mind. We don't know these answers yet. Time will tell. But what we do know is that wearing her hearing aids will help. They will help give her access to sound and they will help her learn speech and language.
December 30th was a big day! A VERY big day. On December 30, 2019 Lainey got her "ears"!
When Lainey got her ears, it wasn't a big "YouTube moment". It wasn't as if she heard our voices for the first time. To be honest, we don't notice a difference when she has her ears in or not. The degree of her hearing loss is not significant enough for us to notice right now, especially this early in her speech and language development.
But that doesn't mean she doesn't need to wear her ears. Every appointment with Audiology and ENT, we are reminded about the importance (and effect!) of Lainey wearing her ears for as much as possible. It can be a lot of pressure!
After getting her ears, a big unanswered question remained. What caused Lainey's hearing loss?
We had no family history of hearing loss - which was a question we were asked very frequently. On January 6, 2020, we met with Lainey's (now-retired) ENT. He examined her ears and discussed his recommended approach going forward to help answer this question.
Lainey's hearing loss could have been caused structurally or possibly through genetics. Even though we had some genetic testing performed, there was more that could be done. If genetics were not the cause, he suggested coming back when Lainey was one year old to perform an MRI to see if her bone structuring/composition was the cause. At that appointment, he also ordered an EKG to rule out some rare conditions with the heart that can occur with hearing loss.
So the next day, we were back at Children's, and Lainey had an EKG to "turn over every rock" as he explained it. Everything came back as it should - normal.
In April, we met with a Genetics team. They offered a few different suggestions on the genetic testing they could do. We decided to go with a very large comprehensive test, in hopes it would give us an answer. Lainey got the required blood work sent in and then the waiting game began. They told us it could be months until we received the results. And it was.
In between then, we had routine appointments with Lainey's Audiologist (about every two to three months) to make new mold inserts for her growing ear canals. The molds would be sent to be made, and we would receive her inserts in the mail, roughly three to four weeks later.
We also had some tough weeks of keeping Lainey's ears in, accompanied by extreme guilt for feeling like I couldn't keep them in enough during the day. When Lainey was around five months old, she learned her ears could be removed and put into her mouth like a toy. We started using bonnets to help keep her ears in, which worked great for a few months until she was rolling all over the place. She also had learned she could tug them out through her bonnet so we switched to "ear suspenders" for holding her ears in place. Lainey has been using her ear suspenders since she was seven months old. Since switching to ear suspenders, we've been much more successful in keeping Lainey's ears in - until she gets tired. Then all bets are off!!
Finally, on July 15th, we received some news. Some news that was very tough to hear, but since then, we have come to peace with. It is amazing what time & God can do.
On July 15, 2020, we learned the cause of Lainey's hearing loss. Essentially, it was Tyler and I.
I was lifting in our basement, and I saw a MyChart message from the genetic counselor. The message asked for us to discuss Lainey's test results. My heart sank a little.
We called the genetic counselor, and he said that through the genes panel, the cause of Lainey's hearing loss was identified. He explained to us that Lainey has two genetic changes in the GJB2 gene, which has led to her autosomal-recessive non-syndromic hearing loss.
What that meant was Lainey inherited these changes (or "bad copies") of the gene from both Tyler and I (we are both carriers of this recessive gene). He proceeded to spell it out for us. Since we are both carriers, our future children have a 1 in 4 chance of having hearing loss. (This is something we have not shared publicly. And quite frankly, it is a detail I was going to omit. But in the spirit of full transparency, I am including it.)
That statistic hit me hard.
"How do you feel about that?", he asked.
I didn't have much to say. Again, I was in shock. And again, tears.
But the conversation continued, and we learned that Lainey's hearing loss is non-syndromic, which essentially means the mutation causes isolated hearing loss, which is great news! He explained that this means she is not at an increased risk for other medical conditions that are common with hearing loss (like blindness, thyroid problems, kidney problems, or balance issues). To be honest, we did not realize Lainey could have been at risk for these conditions.
We are so thankful to know the cause of Lainey's hearing loss, that her hearing loss is stable, and that she is not at an increased risk for other medical conditions. Since we know these answers, Lainey's appointments have tapered.
Currently, we only need to meet with ENT annually, but we will continue to have our frequent appointments with Audiology since Lainey's ear canals are growing at a rapid rate.
As much "tough" news as we received over the past year, it all seems so inconsequential now as I reflect on it. I know I may be overly optimistic but that's always been my desired approach. I know this is just the beginning of Lainey's hearing loss journey. I know there will be tough days ahead. We have been informed many times about the challenges Lainey may face. I would be lying if I said I wasn't nervous about them. But there is something I didn't know one year ago...
One year ago, I didn't know Lainey as well as I do now. I didn't know how STRONG and CAPABLE she is. How determined. How persistent. How spunky. How independent. How SO DANG SMART she is.
She already has shown me there are no limits. Her personality is boundless, and she does things HER WAY. I believe God only gives us what we can handle. I know Lainey can handle this. I know whatever challenges Lainey may face, she will get through them. And I will be right there - guiding, encouraging, and doing whatever is needed for her to overcome them and succeed.
I got you Lainey!! Mama loves more than words could ever describe!!!!
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