We are only a little over two months into this journey, yet it feels like years. I’m not sure if that’s a good thing or not. Where to begin?
Alex was diagnosed with a high frequency hearing loss at the age of 4. He hears low frequencies normally, but his ability to hear drops off as the frequencies get higher. (Isn’t it convienent that my voice is high frequency, which he can’t hear unless he’s wearing his hearing aids??) Newborn hearing screenings weren’t around when Alex was born, so we don’t know if he had the loss from birth or if it progressed to where it is. Alex learned to speak relatively well, and apprently became an excellent mouth reader. I always say that is his super power. Around the age of 3, my mother-in-law noticed that Alex wouldn’t respond when she said his name. Doctors in our small hometown blew her off claiming that it was nothing. They took him to a leading clinic in Memphis that did a test and diagnosed him with the hearing loss. He started wearing hearing aids shortly after and began speech therapy. He had a hard time with kids in school, and the hearing aid technology wasn’t that great. He stopped wearing them during college until about 4 years ago. We had a bit of a ‘come to Jesus’ moment because it was almost impossible to communicate with him unless I was standing directly in front of him (so he could read my lips). Hearing aids have come quite a long way since then and he loves the set that he has now. Plus, no one makes fun of him anymore! In fact, most people don’t realize that he has any type of hearing loss or that he wears hearing aids. I knew about his hearing loss when we started dating, but it obviously wasn’t a deal breaker – no where near it in fact.
We knew that there was a chance that our children would inherit his hearing loss. It was something that we knew would have to be monitored. No big deal! So, we’ve been monitoring and proactively testing. Anna failed her newborn hearing screening (most likely from fluid in her ears). She was retested at 6 months and passed. She has passed every test since. Her hearing is great.
Luke passed his newborn hearing screen. He was retested at 9 months (should have been at 6 months, but time got away from me – I could kick myself for that). At 9 months, the pediatric audiologist did a hearing field test. Basically, it tests the overall ability to hear, instead of focusing on each ear individually. They look at four ranges. Luke failed two of the ranges. I wasn’t alarmed, although I don’t know why. Maybe I thought it was a fluke? The hospital told me to come back in three months for another test. I didn’t push for an earlier date. Again, I could kick myself. Guilt comes with parenting, right?
When Luke was 12 months, middle of December, we went back for another hearing test. Alex and I had noticed some differences between Anna’s developmental hearing/vocal path and Luke’s. He wasn’t always responding to his name or looking where sound was coming from. He would take toys and hold them to one of his ears. He REALLY focused on your mouth when you talked to him – even would touch my mouth when I was singing or talking to him. But, he was talking a little bit. He was on track for a 12-month-old, saying 5-10 words. Granted the words were ‘ba’ for ball and ‘dada’ – nothing complex. He responded to music and loves songs and dancing. He wasn’t giving me any signs that would have made me rush him to the hearing booth, but we noticed that something wasn’t quite right. Something was a bit off.
(This is where it starts to get a bit technical. Click here for a little background info to make it a little easier to understand.)
The pediatric audiologists decided to do an ear-specific hearing test (the child wears headphones or ear inserts so the sound is played directly in each ear). This test takes longer, but provides information about each ear. The test is behavior based. Luke has been trained to turn his head depending on where he hears a sound. When he turns his head, he’s rewarded with a toy that moves for him or a TV that plays a scene. The audiologist has to replicate the decibel level that he reacts to with each frequency, in both ears. So, he had to accurately turn/react a minimum of 16 times because they test 4 frequency levels for a child Luke’s age. That doesn’t count the times that he forgets what he’s doing or the times that he reacts at a different level. It takes some time, and he gets tired. I know it seems like this wouldn’t be that accurate, but it’s actually considered the ‘gold standard’ for pediatric hearing tests. You can do something called a sedated ABR which measures the brain response to sound. Still, the behavioral hearing tests are considered to be a better baseline.
Long story short, Luke wore out about half way through the test. The audiologist walked into the booth and told me that we needed to stop, but that he already tested as having a hearing loss. She explained that we needed to come back the next week to finish the test and diagnosis. I hauled Luke back to the car and just sat there. I was confused – what does this mean? Is it a mistake? It can’t be right? What if it is right? Is he going to have to deal with this forever? My poor baby. I called Alex, because he wasn’t with me at the time. Told him the news. I think he was surprised. I think he felt guilty (although he shouldn’t). I dropped Luke off at school. Told his teachers. They were all shocked. (They hit me with, ‘But, he’s talking. He listens to music. He looks when you talk to him.’) I explained that we would know more the next week. I went back to my car, and cried.
I feel silly for even being upset. What was I mourning? Luke is perfectly healthy – he just can’t hear as well as he should. But my baby, my little man. Anything less than completely, perfectly healthy is Earth-shattering. I mourned the fact that my son would have to deal with this. Even a minor loss is hard to overcome in speech and communication. I cried because I realized that kids would make fun of him and at some point he would resent the fact that he has to wear hearing aids. I cried because I could, and I didn’t know what else to do. I just cried.
We waited for the next test and prepared ourselves for what they would tell us. Luke was in a great mood and able to complete the test and repeat all but one frequency that was done with the last test. The audiologist came in and gave it to us straight. His results were the same – he replicated the previous test. On December 17, 2012, Luke was diagnosed with mild-to-moderate sensorineural hearing loss in both ears. Permanent hearing loss. She explained that Luke would need speech therapy and most likely require hearing aids. The audiologist asked if it was okay if she referred us to the Missouri First Steps program. Without hestitation, we said yes. I mean, why would you say no? They would help us!
So, a week before Christmas, the whirlwind started. A little over two months later it feels like we are just now coming out of it – getting our feet back on the ground. We started telling everyone. Alex and I are strong believers that you should have a net of support, so when things happen, ‘the net’ is there to catch you. I’ve always been an open book, so ‘hiding’ everything wasn’t even an option. We wanted people to know, so they could understand. We wanted to talk to people, and get advice. I will say that every single person has been amazingly supportive and helpful. We are genuinely blessed.