My toddler was born with mild to moderate bilateral hearing loss and I wanted to share our hearing loss journey. My son was born in February of 2020, three weeks before the world shut down due to the pandemic.
At the hospital we were told that he failed his newborn hearing screening, we were left with no answers and were told that this happens all the time and that it was likely fluid in his ears and not to worry. Given this was our first child we trusted the nurses relaying this information and left the hospital with hope and a two week follow up with an Audiologist.
The two-week waiting period felt like forever. It was two weeks of stress and anxiety of the unknowns but also hope in what the nurses had told us.
At the follow up appointment we learned that our son again failed the newborn hearing screening. The Audiologist again could give us no answers other than “he failed his screening and would need further testing.” We left the Audiology office feeling defeated and scared with an appointment for an ABR (Auditory Brainstem Response) appointment a month and a half away.
A month and a half of waiting for answers, a month and a half of wondering if our son could even hear our voices, and a month and a half of feeling stressed, anxious, guilty, and sad. This felt like the absolute longest month and a half of our lives. Even though we were unsure if our son could even hear we still made sure that we read to him, talked to him, and sang to him; if there was a chance that he could hear we didn’t want a month and a half to go by of him not hearing language.
When we Finally get Answers
Fast forward now to April 2020; were at the high of the pandemic at this point and were told that only one parent could go to the ABR appointment. Hearing this was awful, it was so challenging to hear and then decide which of us would get to go and be alone as we hear potentially bad news.
We decided that my husband would go, I knew that I could not go by myself and hear the news by myself and be strong for my son. Our son needed someone that would be strong for him and ask questions with clarity; that was my husband. My husband can manage to stay calm in difficult situations and can have clarity and understanding.
The week of the ABR was challenging, it was a week filled with difficult thoughts, challenging conversations, and feeling anxious of what was to come. The day of the ABR was here, of course our appointment was in the afternoon, so we had a long morning of waiting. I took my son and husband off at the Audiologist and drove to my grandpa’s house to wait the two hours it would take to run the test and get long awaited answers. I needed to be with family, there was no way I could wait the two hours by myself.
At the end of the ABR my husband FaceTime me so we could hear the news together and I could have the opportunity to ask questions. Honestly, thank goodness for FaceTime and technology, the pandemic would have been challenging without it.
The Audiologist told us that our son had mild to moderate bilateral hearing loss and would need hearing aids. She told us that he CAN hear but he has difficulty hearing high pitch (frequency) sounds and that was why he needed hearing aids to have access to those sounds. She told us about a program called Early Start and that we needed to find and see an ENT before his next ABR; the ENT would provide hearing aid clearance.
A month and a half of waiting and we FINALLY had some answers, we FINALLY knew that our son could hear; this was the best news we could have hoped for! Now we were off to schedule appointments for a follow up ABR and an ENT.
Continued Waiting for Appointments
Because we were in the middle of a pandemic it took a long time to book appointments; we couldn’t see the ENT for a month and received a follow up for June. The follow up ABR would confirm the results from the first ABR and at that time we would order hearing aids and do the fitting.
During this time of waiting for the ENT appointment my husband and I had countless conversations. Some of our conversation topics included do we want our son to have hearing aids, what would that mean, what kind of life would he have, and were they necessary. We spent a lot of time grieving and confused as to why this happened, how this could have happened. I spent a lot of time crying and grieving the life my son could have had without hearing loss. We were honestly in denial with what was happening.
During the waiting period we shared the news with our family and friends; that was hard. There were mixed feelings, questions, and a lot of “will it get better? He will be fine, don’t worry.”
Of course, when the ENT appointment came up only one parent could go; this time I went with our son. The ENT cleared our son to wear hearing aids which was fantastic news! At the ENT appointment the ENT told us that it was in our son’s best interest to get hearing aids. He shared that if we didn’t get the hearing aids then he would not have access to the sounds he was missing, he would most likely have a speech impediment, and that he would not develop properly. Hearing this information made up our minds, it was in that moment that we knew our son NEEDED hearing aids; it was necessary.
Follow Up and Hearing Aids
June 2020, we had our follow up ABR and got our sons hearing aids ordered. We decided to get a teal/blue color for him with clear earmolds. They would take a month and a half to receive, and he would get them before he turned 6 months old. The ENT told us that with babies it was important they received hearing aids before 6 months for them to work the best.
A few days shy of his 6 month birthday he received his hearing aids. His hearing aid fitting was rough, my husband took him alone. I again went to my grandpa’s house and FaceTime my husband when the Audiologist turned his hearing aids on. It was a beautiful moment, he lit up when he heard our voices and had the biggest smile; it was a bittersweet, eye opening moment. We cried, happy tears, and were thankful for technology but angry that it took so long.
Our journey to getting hearing aids and having our son have access to sound was long. It was filled with a lot of emotions, denial, anxiety, stress, and tears. But it is a journey that I would not change, it’s a part of our lives and story.
Where we are Now
All our fears and thoughts were quickly debunked. Our son is now 2.5 years old and is honestly thriving. He is on track with any hearing toddler his age, his language is clear, he’s learning and growing. He is the sweetest most loving little boy, and his hearing loss is just a small (but big) part of who he is; it is not something that defines him of the life that he is going to lead.
Our journey was different due to being in the middle of the pandemic and it was hard having to do it alone and not be with my husband through. I hope that if you’re reading this and your child was recently told that they did not pass their newborn hearing screening that you find peace in knowing that it will be okay, that there are resources available for your child to have access to hearing all sounds, and to be sure to lean on your family and spouse during this time.