Written By:Brenda Agnew, Client Liaison Dec 21st, 2007, I will never forget that day. Maclain had only been home a few months from the NICU, and we were scheduled to go for a hearing test because he had failed his newborn hearing screening in the NICU. The doctor assured us it was most likely the noise of the hustle and bustle happening in the unit that had caused an issue with his screening results. So we weren't super worried, plus we felt that he was hearing us when we engaged with him. We set off for our appointment, not too worried and assuming this would be a routine test and he would pass with flying colours. Hearing loss was not on our list of worries with all that Maclain had faced.
More bad news
Almost an hour passed, and with each minute, my heart was sinking. There was no way it would take this long to confirm that his hearing was perfect. When my older son, Chase, had his newborn screening in the hospital, he was in and out in no time. After what felt like an eternity, we were called in and asked to sit down. All I remember hearing was, "your son is profoundly deaf," and then I got light-headed, started seeing spots and felt like I was going to be sick. I recall seeing the audiologist pointing to a picture on the wall of a huge ear as she described that he had what she thought was auditory neuropathy. She also explained that this was a permanent condition and asked if we wanted to be given resources to start learning sign language? We left the appointment, and I was devastated. We had already been through and lost so much. I was hopeful that things would be ok and the worst was over after Maclain's discharge. Looking back, Maclain's permanent hearing loss diagnosis hit me harder than his eventual diagnosis of Cerebral Palsy. I think because that had been in the back of my mind since his premature birth.
Hope restored
I came home, took a few days to digest, did some research and then asked for a second opinion. A month later, we found ourselves back at the audiologist's office, which confirmed the diagnosis. This time though, the audiologist asked us if we wanted our son to be a hearing child. We looked at each other in a bit of shock after being told that was not an option before, and we immediately said yes. Less than a month later, Sick Kids saw us in the cochlear implant program to start the journey that would give Maclain his hearing back. The path was anything but smooth. I needed to advocate for my son at every turn because Sick Kids had not yet implanted a child with such significant physical challenges. Still, at 18 months old, after trialling hearing aids and vigorous SLP sessions, Maclain received his first implant. At three years old, he got his second implant. We later learned that Auditory Neuropathy, the hearing loss he has, was consistent with his Kernicterus and was caused by his untreated jaundice. The doctors told us not to expect much and certainly not to expect him to be verbal, but the hope was that having access to the hearing world would make it easier for us to find alternative modes of communication for him. His SLP was so nervous she could not sleep the night before his first surgery. She worried if we were making a big mistake. When an implant is placed, all residual hearing is eliminated. When we see her now, she tears up every time Maclain says anything. I laugh every time, but my heart also beams.
A bright future
Today he is 13, he hears at an age-appropriate level (maybe he hears more than he should at times) and is a verbal kid. His speech is still affected by his dystonia and Cerebral Palsy, but he never stops talking. His successes have been solely attributed to the incredible Speech-Language Pathologists he has had since he was just a few months old. The multiple techniques and adaptations to make things accessible for him. Their dedication, belief and determination have brought him to where he is today. Technology gave us the start, but the therapists and educators got us to where we are today.
Grateful
For me, the first time I heard my son say "love" or "mom" or even the colour "green" brought me to tears. The moment his implants were activated, he cried, hearing our voices. These were all things that we all take for granted every day. There is no way to put into words how I feel on an hour-long car ride engaged in a full conversation with my son, or hearing him talk to his friends, or call for us demanding more ice cream. May is Speech and Hearing Month, and I want to express my forever gratitude to those professionals who support those living with hearing loss and speech challenges. You are changing lives! Thank you for joining us for this edition of Brenda's Corner. Please continue to follow her family journey for advice, insights and education related to parenting and empowering children of all abilities. Any questions? Contact Brenda directly at agnew@gluckstein.com.
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