I am still not sure I like the title for this post. This title could be used for many of the posts that I want to write about. I think the reason I keep coming back to it for this post is that as I reflect back on Kate’s story so far, this is the first time I really cried and felt the pain of loss – that my little girl had lost something a part of herself that she didn’t deserve to lose.
Kate’s initial hearing test at CHEO was done in a ‘sound booth’ and she was checked for responsiveness to sound. Because the findings were inconsistent, Kate was scheduled for a second test in November. This time 2 different audiologists worked with Kate. These ladies were wonderful with her and were able to have her cooperate as well as a 1 year old could be expected to. Still, Kate’s hearing test was ‘inconclusive’ as her reponses were not reliable. They discussed with us the fact that Kate had passed her infant hearing screening test and told us there had been otoacoustic emissions at that time, which indicated that the hair cells in the cochlea had been present then but that they appear to be gone now. They told us this was a ‘red flag’ and means the echoin the cochlea, which carrys the sound to the hearing nerve, is either weak or gone. They were also listening to our experience and story about our concerns for Kate’s hearing and took those into account.. They wanted to further investigate Kate’s hearing by conducting a sedated hearing test called a brainstem evoked response audiometry or BERA. This would provide evidence if Kate’s lack of response to sound was her hearing, or if it was something more cognitive in nature and part of her global developmental delays. The test would require that Kate be sedated and the plan was to coordinate with neurology to do the MRI at the same time. We didn’t go into details about what hearing loss would mean, whether it would be progressive, if Kate would need hearing aids, or what therapy might be required – but those were all questions I had.
On November 18th, 2008 Kate had a sedated BERA (and MRI). The BERA was positive for hearing loss. I can see the moment clear in my mind as the day we heard this news. Kate was still hospitalized with her 4th episode. We had been receiving endless information about other serious medical conditions. Kate was still not well and we were worried for what might be next. She had undergone an MRI during her BERA and we knew we would be speaking with the neurologist and neurosurgeon later that day. In fact we were sitting outside the MRI suite when the audiologist came to give us the news that they had confirmed Kate had ‘significant’ hearing loss.
I was taken by surprise at my reaction to the news from the audiologist. I was stunned.
I tried to explain away in my mind that they c ould be wrong and that they would need to investigate further. I clung to Brian. I wanted someone to say they were wrong or had somehow made a mistake. And then I knew it was true, because all this time I had been advocating it. I had been telling them she could not hear me. And here I was faced with it and coming to the realization that they were confirming my fears. And this all happened in a moment. And I cried – I really cried. I wept out of pure emotional exhaustion, I wept because something had been taken from my child that she would never get back.
Reflecting back on that moment now brings back so many memories. The perspective I had then really informs the perspecitve I have now. Be grateful for what you have – try not to mourn the losses for too long. Move forward.