This is the story of how I learned about raising a deaf child. In this blog post, I talk about the moment I discovered he had hearing loss.
When I had my kids – I had their entire lives planned out for them. From their day they were born to where we would live and they would go to school. All of my plans changed with my first son – Cj. The diagnosis – hard of hearing, which over time progressed to completely deaf was one of the biggest shockers of my entire life x2.
PREGNANCY / BIRTH
I probably had one of the most normal birth stories of most people – and I say normal in the sense that I had absolutely no complications. Legit – if I wouldn’t have gained 70+ lbs for both of my pregnancies, you’d never know that I was pregnant. It was just like living my everyday life except for a basketball under my shirt. Well – two basketballs. Insert laughing emoji here. My dietitian self still gasps at that number.
I had CJ on a cold January day. There was nothing spectacular about my birth story other than the fact that I was induced at 39 1/2 weeks and he was born in 4 hours. He weighed a spectacular 8 lbs ~7 oz. I always joke that he was a sack of potatoes because he was the fattest baby I’d ever seen. Brown hair and the bluest eyes I’d ever seen on a baby at birth. It was love at first sight.
Now, depending on when you’ve had a baby, rules have changed over the years. Routine hearing tests at birth are now a requirement in most states because of the number of deaf / hard of hearing children being born. I’ll be honest with ya’ll. I had never even considered the fact that I would have a deaf or hard-of-hearing child. The question that I get asked the most is “Does hearing loss run in your family?” And the reason that I had never even considered it was because there was absolutely no one on either side of my child’s family that had any sort of hearing loss. Vision problems – well that I would have been able to explain away because both sides have terrible vision aside from me. Hearing loss? None. Nada. Not a single sole. That is until that cold January day.
I remember being in the hospital and just loving watching my first child. I had to stay two days in the hospital, and that meant that before we left they would do a hearing test. I remember watching them take his first hearing test. it’s called an OAE and it’s this little handheld device that goes in the infant’s ears and tells you whether they passed or failed. needless to say – he failed. In fact, it was only one ear that he failed on. He passed one side. The nurses all joked and said how he was just moving and would pass it the next time, but he would still need a follow-up appointment at a hearing center.
We had to go to the nearest clinic about 3-4 weeks later for another follow up hearing test. The news was not what I wanted to hear – hearing loss. This meant that he would have do a sedated hearing test to determine what level hearing loss he had.
LEVELS OF HEARING LOSS
Here is the levels of hearing and hearing loss. Normal hearing is around 20 decibels. 26-40 decibels is slight/mild hearing loss. Moderate hearing loss is 41-60 decibels. Severe hearing loss is 61-80 decibels and a diagnosis of profound hearing loss is 81+.
THE FIRST YEAR
CJ started at mild hearing loss (30-40 decibels)- with a borderline moderate hearing loss. This meant he needed hearing aids so he could develop speech. Over the course of the next 6 months, we had so many follow up appointments and tests that I could not believe it. Sedated ABR’s – which we had to complete at Ochsner in New Orleans. Sedated MRI’s. Sedated cat scans. When I tell you that Ochsner’s nurses and anesthesiologists knew me by name – I am not joking. And this was simply for my first child. But the reason for all of these visits is because his hearing was growing worse. Our ENT at Ochsner told me it was “progressive hearing loss.”
At 6 months old, his hearing stopped getting progressively worse. But that hearing level plummeted from 30-40 decibels to a now severe hearing loss around 60-70 decibels. Hearing aids can amplify somewhere in the range of 50 decibels so he could hear “normal.” I put “normal” in quotations simply because you cannot duplicate normal hearing in a hearing impaired child / person. As much as we would like for it to be “normal,” this will simply never be.
I’ll talk about speech therapy services in detail later – but he had to get speech therapy services 2x a week. The fear was that he would not develop speech. Although I have many stories of my son losing his hearing aids, breaking them – thank goodness for insurance and warranties because that child would bite and break the battery clips and I’d have to send off for a replacement.
THE DAY EVERYTHING CHANGED
I could tell you the following events that happened all in one breathe because that is how they felt. CJ was 3 years old – in school speech therapy because the school takes over at this age from early steps. He had been doing SO well. He was talking and developing speech and able to hear when I would call for him from a decent distance. I even have a video of him saying “I love you.” All in one day – that changed.
He no longer heard when I would call his name. He no longer would respond to sound. It was as if he couldn’t hear anything. The speech therapist that was working with him told me that he wasn’t even responding to the bell ringing at school. This was the last thing I was told before we scheduled a follow up hearing test at our local center.
So our six month long visits to the audiologist had now been bumped up. We went to the audiologist and sat him in the booth. I remember her face when she came tell me that I needed a new sedated test because she was not getting any good readings. I asked if he needed better hearing aids since she was getting such terrible readings. Her face was grim when she looked at me and said “Stephanie, hearing aids aren’t going to help you with the results I just got. You need to take him back to Ochsner.”
A few weeks later, I am sitting in Ochsner’s surgical waiting room for what felt like the 100th time at that point. We had the most fabulous team of people at that hospital (and still do). They gave CJ his “happy juice” and off he went to yet another sedated ABR. This time the procedure felt like eternity. Like days or weeks had passed by when it was only a mere 4 hours. Every frequency had to be tested. Every level of sound.
Ya’ll – when I tell you this memory feels like yesterday. I mean it. The doctor and audiologist came get me and brought me to CJ, where he was just waking up. He smiled at me and already was wanting to play. My perfect baby boy.
The doctor came in and said the words I was dreading. You know in your heart when you are going to get bad news and the news that I was given was earth shattering. Deaf. No hearing at all. Completely gone. Tapped out the machine. Never will come back. Hearing aids – irrelevant. I just remember sitting there on the edge of that hospital bed in the outpatient center and looking at my completely happy child and didn’t know what to do.
COCHLEAR IMPLANTS – THE NEXT JOURNEY
Follow along for the next posts about the journey to his cochlear implant surgery.