I’ve sat down to write this update having just sung Clara to sleep. No bottle, no cuddles, just a simple song and her eyes were closing gently. This works because Clara can hear.
It’s been the same song from the beginning. I don’t know why I sang it to Clara originally, it was just one of those things that pops into your head when you’re desperately wanting to communicate with a newborn who you can’t pick up and cuddle. At the time I assumed she could hear something, I knew it would help bring us closer together, even if it was just building familiarity with my voice. Every time we were told she’d need to be operated on again, and just before she was taken off to theatre, I’d sing it to her softly, over and over again, whispering the words to her, leaning in as close as I could possibly get. Over time, I’d sing it to her regularly, it became a habit. The only thing to soothe a crying Clara in the car? This song.
At the end of August, we went back to Audiology for a Visual Reinforcement Audiometry test for the first time. This is a behaviour test for children who are too young to click a button to indicate they’ve heard a sound, so instead they’re ‘trained’ to respond to a visual animation. We’ve had the results back.
What’s involved in a Visual Reinforcement Audiometry test?
Clara sat on my lap, facing away from me, playing with a small toy to keep her entertained. Facing us was our audiologist who would monitor Clara’s reactions and take notes. In another room, another audiologist would control sounds and could trigger a visual stimulant. These were light boxes with puppets inside, placed at 90 degrees to us, that would ‘reward’ Clara for responding to sound. At first, the audiologist outside of the room would play a sound and light up the boxes, making the puppets dance, so Clara learnt to associate sound with the puppet fun. Then, once Clara knew to turn to the box on the side the sound was coming from, the light box would be briefly triggered if she turned to the correct side when sound was played. During the test, the audiologist would decrease the volume and would tweak the frequency, noting down Clara’s response each time.
Clara responded very reliably – she was so responsive. She showed her hearing was satisfactory in the mid and high frequencies. The lower frequencies were turned up a little before she responded every time, but she was responding. We don’t know if this was because she couldn’t hear them, or she preferred to concentrate on the toy in front of her by this point in the test.
In short, Clara responded to most sounds reliably. The girl can hear! And hear well!
We’re going back to the hospital this week to repeat the Auditory Brainstem Response (ABR) test that diagnosed Clara with Auditory Neuropathy Spectrum Disorder. I wrote a blog post about the day she was diagnosed and what it means here. We’re hoping this test will tell us more – has she matured out of it? Or is the disorder still present and she hears sounds differently?
Either way, we’re a far cry from the words of the ENT (Ear, Nose, Throat) Consultant we saw in July. “No doubt she’ll have hearing aids fitted in the next few weeks”, he said. I told him I believed Clara could hear something. He gave me a look.
Back in February I wrote, “I’m convinced, and I’m hopeful, she can hear something. I’m confident she does react to sound… ” I’ve never lost that feeling. Yes I’ve doubted it – how could you not when medical professionals are telling you the opposite, that she’s profoundly deaf – but I’ve never given up on it. I was worried they thought I was in denial – that I didn’t want my daughter to wear hearing aids or even consider a cochlear implant. That’s not the case – I’d have done anything to help my daughter. After the appointment, I wrote: “Clara is hearing more sounds than we are currently giving her credit for – she responds so well at times to regular voices and conversation, it’s hard to believe otherwise. On this basis, how do we ensure her hearing aids don’t cause further damage? I want whatever is best for her of course, but we can’t rush this.”
Whatever the final diagnosis, it doesn’t matter. Clara can hear. That gives us so much to work with.
In the words of Barney the Dinosaur, Clara’s favourite song:
I love you,
You love me,
We’re a happy family,
With a great big hug and a kiss from me to you,
Won’t you say you love me too.
It looks like one day Clara, you may be able to listen to me sing, and you’ll say just that.