This article reflects my experience during and after learning that my first child is born deaf. The opinions express here are subjective and based off my experience but I hope that some of the information I have shared here will be useful for other parents or caregivers going through similar situations.
Heidi was born in early 2014. Seeing and holding her for the first time is a feeling I will never forget. Time seemed to stand still, I was consumed by the feeling of excitement, joy, anticipation, numbness all rolled into one. One can never quite describe that feeling, it is a special feeling of holding something very precious and very dear. The possibilities and potential for her are endless.
Heidi underwent the routine checks and was given the green light to go home, we were ecstatic . Oh, by the way, we were told, there is just one minor thing, her initial hearing test results were not conclusive and she needs to go through a second round of hearing test. We were told that there was nothing to worry about as there was probably some ear wax in her ears quite commonly seen. We didn’t think too much of it…
A couple of weeks later, we went to the local hospital and did an Automated Otoacoustic Emission test1, the results were still not conclusive. We were told to schedule for an appointment for a more comprehensive test. Heidi seemed to be responding to sounds at home, so we thought it must have been some errors with the tests, though deep inside we were starting to get a little worried.
It would be another month later when Heidi was tested using the Auditory Brainstem Response2 test. I remembered my wife coming out of the evaluation room, with tears pouring down her face, telling me that Heidi has profound hearing loss, and that she is deaf. I was in a state of loss and disbelief; my first instinct was to discuss with the audiologist and set up a second hearing test to verify the results. We went for a couple more hearing tests over the next few weeks and the results were the same. Heidi has profound hearing loss on both ears.
Disbelief and loss will be the best words for how we felt, there has been nobody with deafness from both sides of our families, we also do not know of any friends with this issue. What could have been the issue and the cause for this? We were told that the issue is most likely with her inner ear, her cochlear3, which is not able to transmit sounds to her hearing nerve. There is a 1 in 1000 chance1 that this will happen to a child. We were faced with multiple unanswered questions, what are the solutions? Can she ever hear and develop speech? Can she adapt and thrive in the mainstream society? Can she have a fulfilling and quality life?
To be continued…
1Automated Otoacoustic Emission test: https://www.nhs.uk/conditions/pregnancy-and-baby/newborn-hearing-test/
2Auditory Brainstem Response test: https://en.wikipedia.org/wiki/Auditory_brainstem_response
3What is a Cochlear: https://en.wikipedia.org/wiki/Cochlea