Today, November 8, 2011 is the second anniversary of Kate’s bilateral cochlear implant surgery at Sick Kids in Toronto.
When Kate was only a few months old, I suspected that something was wrong with her hearing. She did not turn to my voice, and wasn’t startled by loud and unexpected sounds. Our family doctor was reassuring and told us that Kate had passed her infant hearing screening test, and her hearing ‘should be fine’. It wasn’t, at 13 months of age Kate was diagnosed with a moderate loss in her right ear and a moderate to severe loss in her left ear. She was fitted with hearing aids and we began to work with her on auditory and verbal therapy skills.
This post picks up on the summer of 2009 when Kate was 22 months old and tells the story of her journey toward becoming a Deaf child and the challenges, ideals, values, and decisions we discovered as parents and as a family during the journey which continues to this very day.
I had begun suspecting that Kate was not hearing us as she should with her hearing aids. Then she slowly started to be ‘non-compliant’ with her hearing aids; she wouldn’t wear them, she’d take them out regularly, she’d refuse to put them on in the morning. The most disturbing sign that something was different was Kate’s loss of her words. She had begun to speak, and said ‘baba’ for bottle, ‘papa’ for Brian, ‘up up’ when she wanted to be picked up. Slowly, as she could no longer hear herself, these words faded away as gradually as they had started. These were all signs that Kate was no longer receiving information from her hearing aids.
It is difficult to assess a non-verbal toddler for progressive hearing loss. They don’t cooperate in the sound booth, which would be the usual method of assessing hearing loss, and they can’t ‘self report’ what they are or are not hearing. It is up to the parents and the audiologists to ‘guess’ at changes in hearing. For a few months we went back and forth with her audiologists about what she was hearing and not hearing, e.g. did she turn to that sound because she heard it – or did she see the person or thing making the sound? One day we performed a highly scientific hearing test as we sat with the auditory verbal therapist, who also suspected Kate’s hearing loss. Have you seen those ‘hand clapper’ noise makers? They make an infernal racket – highly popular at sporting events or in children’s loot bags from birthday parties. The therapist stood directly behind Kate with one. She was completely out of her peripheral vision, and she wailed away on the plastic clapper. I almost jumped out of my seat – Kate showed no response. The AVT paused, and she did it again, this time as close to Kate’s right ear as possible. Kate didn’t budge. Kelley and I looked at each other – and we almost laughed aloud at the ridiculousness of Kate not responding to the sound. But that hilarity quickly gave way to a moment of comprehension that Kate did not hear that sound.
Kelley called the audiologists into the room and repeated her ‘clapper experiment’ for them. They agreed that Kate would need another BERA to assess the severity of her hearing loss. It would be scheduled as soon as possible. It was November 2009, and we had been through so much with Kate and were so focussed on her health issues, that hearing loss and speech had fallen off our priority list. Brian and I used to joke that hearing loss was the least of our worries. We felt it was being addressed and we weren’t focussing our much stressed resources there.
Now hearing loss had become front and center again as we faced the possibility that our child was no longer hard of hearing and needing sound amplification, but that she was profoundly deaf and how would her world change. We didn’t know anyone who was deaf. We didn’t understand the challenges she might face. We only knew a little sign language having adopted some baby sign and worked on some ASL skills with Kate. What would being Deaf mean for Kate?
February 2010 – Sedated BERA
In February 2010, Kate was scheduled for a sedated BERA to assess her progressive hearing loss. As with most tests requiring a general anesthetic, we consulted with her medical team about any other tests or procedures that might be required by her specialists. Hematology was still tracking her severe anemia , which they had now identified as an idiopathic sideroblastic anemia (I’ll catch up on her blood disorder as I pick up on Kate’s story in future posts) – idiopathic meaning, ‘of unknown origin’, so they were requesting another bone marrow biopsy.
[There is another story around the February 2010 general anesthetic, and I’d prefer to write about it in detail in another post. But what you should know is that Kate had an episode in January, and looking back knowing what I do now, I am certain she was not physically well enough to undergo a general anesthetic so soon after her episode.]
At CHEO, when your child is in surgery (which a bone marrow biopsy is considered), you sit in the general waiting room on the third floor. There are other parents there, and you have no idea what their child is there for. You steal furtive glances wondering how serious their child’s condition is based on their facial expression. You duck your head when their child’s surgeon enters the room, hoping the best for them as they go into the hallway for a short conversation about how their child is doing.
Brian and I have sat in that room before – waiting for Kate and worrying. This time we were calm. We knew the suspicion that Kate’s hearing loss had progressed was quite likely, but we were also in a state of denial and thinking that perhaps we were mistaken. We were also not worried about the general anesthetic as she had had them before, but as I write this, the knots in my stomach and memory of our reaction to the events that were about to unfold come back with full force.
After about an hour, Kate’s audiologists Sophie and Marie – two women who we had been through so much with, and to this day are trusted friends and champions of Kate – came to get us from the waiting room. We expected to step into the hallway and hear how Kate was doing in recovery and what the results of her BERA was. Sophie asked us to step into a little meeting room at the back of the waiting room. In that moment, that breach of not entering the hallway as all the other parents had, but rather being led to a small meeting room at the back of the surgical waiting room – every eye on that room was on us – and every parent knew, as we did, that we were about to receive bad news.
“Kate hearing loss has progressed to be profound”. It was as simple has that, a few short words and our world – Kate’s world – changed again.
Nothing could have prepared me for the absolute visceral and emotional reaction that I felt that day in that small room at the back of the surgical waiting room. I felt like a weight was crushing my chest – or maybe it was my heart. I felt tears well up and run down my face, and sobs escaped from me. I was embarrassed at my reaction and overwhelmed by its intensity. I was embarrassed to react this way in front our audiologists, but then slowly understood that they had expected this – or at least anticipated this – and I was grateful at their foresight in providing us with some sense of privacy.
Brian and I had no questions, we just felt sadness and a profound sense of loss. Kate had lost something, something precious had been taken away from her. Something she would never have again. In that intense moment so many images and thoughts raced through my mind. Would she ever say ‘mama’, would she ever hear my voice again, how would this affect her life? We had so many questions and very few answers. We didn’t want to leave that little waiting room, because we knew it would signal the finality of the conversation. We were scared and we were mourning. I thought it was one of the hardest moments of my life and I can remember it like it was yesterday. We had less than 24 hours to absorb the information before Kate would be admitted to CHEO again with a significant reaction to the general anesthetic that triggered a serious episode.