Aria's Hearing Journey ❤️

It all began four days after giving birth to the skinniest little lady with a full head of black hair. All I wanted to do was take my precious little girl home and sleep in my own comfy bed.

We were patiently waiting for our discharge paperwork when in walked an RCH hearing screen nurse. Not thinking anything of it, we start to pack up our belongings around our baby whilst she has her what looked like DJ headphones on undergoing a routine hearing screen.

Initially, the nurse had explained it was a pretty quick test and would be over in a matter of minutes. We stopped packing our belongings after 10 minutes and started to question if everything was ok. The nurse explained that sometimes babies are just born with fluid in their ears, and it was pretty normal to receive a "fail" result. After running the screening three times, Aria's results were consistent with hearing loss.

At this stage, I was more upset that we couldn't take our girl home and that I'd have to spend another night in the hospital because the test would have to be repeated the following day. Not having any family history of hearing impairment, we brushed off the results and just assumed it would just be fluid.

The morning came around after what felt like 500 hours of cluster feeding. Sure enough, her results were again a 'fail'. The lovely nurse explained that we would have to attend the ENT department after six weeks to see if the fluid had cleared.

Six weeks later, my husband and I casually walked into the RCH outpatients clinic thinking that we would be in and out after a quick hearing screen with a pass result. 10 minutes turned into 1 hour. 1 hour turned into 2. The audiologist barely said a word during the testing as Aria had to be asleep for the testing to be accurate. It was a strange atmosphere, sitting, waiting in total silence.

Once the testing finished, the audiologist turned to my husband and me and very calmly told us that our next step would be to see an ENT as Aria has again failed and returned a result consistent with two types of hearing loss. I'm still not sure I processed or even believed it at this stage as it was a concept so unfamiliar to us. It wasn't until we saw the ENT specialist that things started to feel real.

What was to follow was test after test, MRI brain scans, ECGs, blood tests, DNA testing. Finally, after weeks of tests, it was time to see the ENT specialist for the results. What happened next is something I will truly never forget and still to this day puts me into a state of mixed emotions of anger, hurt, sadness and confusion.

The doctor turned to my husband and me and blurted out this next speech like she was telling me what the weather was that day... "Yeah, your daughter has a dual hearing loss. It will most likely get worse in the next couple of years. She might become totally deaf, we won't really know. She needs to be fitted with hearing aids".

The best way to describe what we felt at that moment was probably being punched in the face. I'm not sure if it was her words that hurt or how she said those words—looking back now, probably a combination.

At three months old, our now blonde hair, blue-eyed beauty was fitted with some of the cutest purple and pink hearing aids. I'll never forget the moment the audiologist put them into her tiny little ears for the first time, and her eyes lit up, and she looked at me with so much emotion. I can't begin to imagine the overwhelming intensity of one of your senses being woken for the first time. I froze. The reality was that this was now a part of who she took over.

The audiologist turned to me and said, talk to her mum. She needs to hear you to know that everything is ok. I sobbed and told her, "baby, mummy is here, you're going to be ok". I held her so tight and felt helpless. It was one of those moments that knocks the wind out of you.

We spent the next few months adjusting to life as parents of a child with a bilateral neurosensory and conductive hearing impairment. We were given so many resources and bombarded with information. I received phone call after phone call.

Some days I really appreciated the support. Other days I was annoyed by how much I was being pushed into seeing a psychologist to "deal with my child's disability". One particular day, I called my mum crying and explaining that I was sick of people trying to tell me that something was wrong with my daughter and that I needed to talk to a professional. It almost made me feel like I wasn't accepting that my daughter had a disability and that I was supposed to be sad. But in reality, all I saw was a perfect little human who just needed some extra help, just like some people need glasses. I didn't see her as a "deaf girl". I saw her as my daughter, and that was just one little part of her amazing little happy self.

Her journey hasn't been easy. From the little things like trying to keep her hearing aids in her ears and not her mouth as a toddler with adorable little special made bonnets. To undergoing operation after operation to help the conductive component of her hearing loss, she has shown strength and has been braver than a lot of adults I know. I have lost count of the amount of ENT appointments we have attended.

Recently we were given the news that Aria's hearing has now progressed to severe and that she cannot have any further operations to help the conductive component. Whilst this was a huge blow, she still continues to have a huge support network around her, including Aurora school of the deaf, speech pathologists and hearing Australia. They have provided her and us with numerous resources to develop her language. Her language is pretty incredible, and people often don't realise she has the impairment as with her hearing aids and support, she has learnt to communicate and not fall behind.

I can't stress the importance of early intervention, and I'm not really sure where we would be without the support of some pretty incredible people in her life.

Covid was difficult for Aria, and I imagine many others who use lip reading and facial expressions as their primary way of understanding communication as the masks removed mouths.

Aria is now 4. Aria is the dictionary definition of a Disney Princess. She has a wardrobe full of costumes and knows the entire script and songs of most Disney movies. For what her ears haven't given her, her other senses have entirely made up for this. Only last week, Aria took part in her dance concert and blew us away with her ability to follow and perform her dances.

One thing I know for sure is that Aria continues to amaze not only us as parents but everyone around her. Her confidence and the ability to take her challenges in her stride is something that warms my heart and makes me love her in a whole new way.

Recently her kinder teacher told me that when questioned by other children in her class about her hearing aids, Aria took them out to show them to the other students and said very proudly that "Yes, I have to wear these because my ears don't work like yours, they help me to hear you better". The kinder teacher looked at me confused when my response was to cry like a baby. At that moment, I knew that Aria's attitude to this was everything I had hoped it could be. It's not something she is ashamed of like so many people or families of people with disability can be. I hope that never changes for her. It reinforced the idea that children are born innocent. They aren't born with the ability to discriminate. Our big voice becomes their little voice. At that moment, I was proud.

For anyone who has taken the time to read Aria's journey, I hope one thing you can take away from it is that people with a hearing impairment are no different to you and me, and it's not a loss at all. They are beautiful humans who just learn differently and are lucky to experience the world with different senses that have intensity.

As for Auslan, we as Australians and the schools of Australia have a lot of work to do. This language should be just as much a part of our daily living as is English.

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Comments

Peter kassis

You are a super star Aria, we are so proud of you.

Proud Grand dad

Kristen & baby Elliana

Thank you so very very much for sharing! Our baby girl, although passed her newborn hearing test, was referred onto an audiologist “just in case”.. bilateral conductive hearing loss was the outcome of 2×3hr audiologist appts.. she has down syndrome and hearing loss goes hand in hand, as does congenital heart defects as we found out just prior to her birth (AVSD).. and I most definitely hear you re: health professionals being very unforgiving with their words, no empathy whatsoever.. as special needs mama’s we definitely grow thicker skin very quickly don’t we! Our little babies came to us for our love and guidance, to simply adore and treasure despite all their hurdles and issues, strength and resilience will always shine through most. Thanks again for such beautiful words.

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