I remember not quite sleeping that Monday night, I was on google during every feed. As she lay there close to my body, sensing a form of protection and secure bonding from breast feeding I felt I was doing all I could to make the start of her life better.
I must have read about 100 forums, disability pages, how the structure of hearing loss is measured – you name it I became a pro of hearing loss and audiology over night!
I was still fighting a lot of guilt, a lot of what ifs and struggled to see her father forgiving me. I sensed his sheer devastation and heart break just by the look in his eyes. The amount of times I apologised for the difficulty our daughter faced, and the amount of times he told me it wasn’t my fault. I didn’t take any comfort in his kind words. How could I? Our precious tiny girl faced a life of unknown to us, silence, dark and gloomy. The way I can describe, in my own words since losing my hearing is, can you describe a storm but in sheer silence. What do you picture, What can you see?
– The world In front of you begins to turn dark�- The hairs on your body start to stand on edge, it feels the cold and soon you’ll start to shiver and feel wet from the downpour. �- Clouds shadowing any life and happiness on the ground �- You can no longer hear the deep groan of thunder, so everything stands still or there’s a strong sense of anger from the storm of nature, where its winds are picking up and throwing anything in its way. Then you see the flashes of anger and almost frightening from lightening.
This almost resembles my feelings to the unknown explanation of why I lost my hearing in my early teens.
We was silent on our journey to the hospital. I’m not sure if we was anticipating the results, convincing ourselves it wouldn’t be so bad, after all prior to this appointment her father was positive she could hear and she was interacting. I didn’t hold or see the same hope he did.
We was called into a room, and told to settle Alivia and rock her into a sleep, which i did. She had some sticky product applied on her forehead and behind her ears. Which was then followed by a pad and clips with wires which then attached to the test itself. The room is silent and the audiologist starts her investigation. Myself and Dean kept giving each other reassuring glances as I held my sleeping baby, I kept watching anxiously as the audiologist clicked her mouse and I immediately diverted my attention to Alivia’s face, searching for a response to settle my nerves. Clicks or tones of varying intensities are presented via probes placed in the ear canal. Electrodes are attached to the mastoids, which is what the sticky pads and wires are used for. The sound in the ear canal passes to the cochlear which converts the sound waves into a nerve action potential which passes along the auditory nerve. Then the signal travels to the brainstem and on to the cortex where it is processed by the brain. This wave of activity is collected by the electrodes, amplified, and passed to a machine for processing. Presenting progressively quieter sounds enables a response threshold to be obtained.
The test must have lasted for around a hour and half, until Alivia-Ellen started to become restless and unable to settle again. But I must admit I was glad for the audiologist to call it a day, she received half of the information she needed to give us a form of result, my body was aching from her c-section delivery just a week ago and having to hold her so still to not interfere with the test was a killer! But at the same time I didn’t want anyone else to hold her, not even her own dad. Which could have been seen as selfish. I felt this was all my wrong doing, therefore I needed to protect her and show her that mummy was with her every step of the way.
The audiologist confirmed what I already knew deep down, just unwilling to admit. Her left ear wasn’t giving a good response to the test compared to her right ear. They both also gave inconclusive results among the test. But what she could collect, confirmed Alivia most definitely had mixed Sensorineural hearing loss and she was marked at moderate to severe. We was told in great detail what the next steps was, ensured we fully understood her type of loss and we was referred to a consultant also.
�She left the room to give us some time to allow it all to sink in, there was a lot to absorb and understand. Even with hearing loss myself, this was an entirely different journey and experience.
Her father turned to me, his face looked like it was struggling to be held up. Threatening itself not to break its strong structure. His smile was weak and heartbreaking, eyes filled with 100 emotions threatening to flood and pour down his face. My stomach knotted and I tried to form a warming smile while reaching for his hand, as if to say everything will be fine.
His strength defeated, he broke down in tears, “my poor baby girl”. And took her from my arms and held her tightly. As if he was attempting to fix the pieces back together again. But unfortunately nothing was broken this time, nothing can be changed or fixed. This was a life completely different to what he would ever expect.
We left that room, full of emotion. For what ever reason, I couldn’t cry. I couldn’t feel a thing. Maybe numb from emotions, or trying to remain strong for Dean and Alivia-Ellen or show him I was capable of dealing with it and what was to come.
We had an amazing response from our families, each individual was reassuring to us. And their kind words couldn’t have been more comforting.
We didn’t really know if we wanted to break the news to the world just yet, but I thought it would help us deal with the news and process it quicker if we confronted it. Which we did so, again on social media we got a lovely warming response.
She was fitted with her hearing aids at 3 months old. But showed very little, if not hardly any response at all. Which was absolutely devastating as we saw so many clips on YouTube with babies smiling straight away after hearing it’s mothers voice for the first time. But we tried hard not to let this be disappointing to us.
She had this form of testing every month until she was 8 months old she then moved onto what is called a distraction test. Know as a VRA.
�This is a technique that can be used to determine frequency and ear specific hearing thresholds.
�The child is seated between two visual reinforcing reward boxes with a loud speaker on top of each one. To condition the child a sound is played from one of the boxes on the left or right, as the child turns to the sound they are presented with a visual reward in the form of an illuminated puppet in the box.
After several times your baby will now be magically trained to turn to one of the boxes when just a sound is played. Although Alivia did cheat a few times and would turn her head just to see if she could see the bunny or a bus light up. A series of tones are then played at reducing intensity to obtain a minimal response level. After the child turns to a sound they are visually rewarded with one of the puppets. In order to obtain ear specific hearing thresholds the child may wear headphones or have small insert phones placed in the ear canals to generate the stimulating sounds.
At 10 months old, was when they finally received a full investigation result. Alivia-Ellen displayed very little response, and what we thought was progression wasn’t quite so. She was then finally diagnosed with profound deafness in her left ear and severe/profound deafness in her right ear.
My heart sank. And I could almost hear the crack of my mothers heart who was sitting behind me. Alivia was then given the strongest prescription of hearing aids. But again the possibility that she would benefit from them or not wasn’t certain…
We are still currently at this stage and there still isn’t a clear satisfying response while wearing her hearing aids. Sometimes she may turn, others she’s blank. She’s due a review and more tests in August. Which I will try to document so all of those who don’t know what to expect or would love to know what happens, can witness this.
We have discovered that having a baby who is deaf will take more on your part as a parent. More time, more patience, and more work compared to the parenting we provide to our oldest ‘hearing son’. It will be different, but Different isn’t bad, it’s just different!
Remember that every child is unique and has a variety of needs. Even our son has needs that need to be kept and maintained. The demands of extra time could just as easily come from a child with a learning disability, or an extremely bright child that needs consistent stimulation. It doesn’t in any way change or diminsh all of the wonderful experiences of being a parent. I think the experience of having a hearing and non hearing child makes you stronger and change as a person due to the challenge of parenting.
Your walls become unbreakable, yet you also appreciate and soften, you become knowledgable in your child’s condition, more than most professionals and form patience you never deemed possible.
Your baby is the same beautiful baby, it was before you found out that they have hearing loss. The only difference is that you may have to learn to communicate with her a little differently, than you imagined.
Let this journey help set the foundation for your attitudes and opinions about what your child can be capable of, don’t feel your expectations for them have to different or lower as your hearing child.
We have no reason to ever expect less of Alivia-Ellen or assume that she would or could achieve any less than our son.