My beautiful daughters Mia, four and Halle, three have something very special in common – they were both born with moderate hearing losses.
Mia was just three days old when she failed the mandatory newborn hearing screening. I was blissfully enjoying my first moments of being a new mum when a nurse came in to collect Mia for her screen. I remember letting her go, enjoying a cup of tea and thinking how utterly happy I felt.
When the nurse returned ten minutes later, I said “I hope she passed!” – but the nurse shook her head. All of a sudden, I was alone in the room holding my beautiful daughter with a horrible feeling in my stomach. When the room filled up with family and friends during visiting hours, I remember being in a kind of trance while I tried to join in conversations with everyone.
As a first-time mum, I was in complete shock. I wasn’t prepared for my baby to ‘fail’ something – and this news amplified the emotional rollercoaster that many new mums go on in the early days of motherhood.
I had never felt so scared and helpless. I spent the next week convinced Mia would never talk. I thought she would always be different to others, be socially and emotionally effected in a negative way. I felt I had failed her as a mother. I felt as though no one else could relate to me, or understand. It made me angry when I saw that everyone else had perfectly healthy babies and I was ‘the one’ they felt sorry for.
Looking back now, the way I felt was not the reality of the situation. In most cases, children with hearing loss are able to learn to talk or they choose to communicate in other ways. However, having had no experience with hearing loss up until that point, I wasn’t thinking clearly in this early time.
In the week following the screen, my husband Drew and I were given information on next steps for Mia but nothing sunk in. We repeated the screen three times in hope that it was not correct.
We travelled to Sydney Children’s Hospital soon after for further testing, and I remember this being the most horrendous day. We had a tiny baby on a drive that was a couple of hours from home, and we were still new to feeding and the basics of looking after Mia. On top of this, we were just uncomfortable with the idea of taking our beautiful little girl into a hospital when we should be at home enjoying our time as a new family.
When the diagnosis of hearing loss came later that day, there was a rush of anger and fear. The drive home was terrible.
Learning to understand our new reality was an emotionally challenging time – and this was combined with the constant battle to keep Mia’s tiny, new pink hearing aids on her equally tiny ears.
When Mia was one year and one month old, our second daughter Halle was born. This time we requested the newborn hearing screen be delayed until the day we left the hospital. Halle also failed her screen and, although we had prepared ourselves it was still devastating. Halle was diagnosed with an almost identical hearing loss.
While we still mourned, there wasn’t the element of the unknown. We knew what was going to happen, we knew what came next and we had witnessed Mia’s amazing growth and development over the previous year. We felt safer with our knowledge and experience.
We then chose to focus on the undeniable bond the girls would form over sharing the same condition. Today, the girls are the best of friends and Mia loves being a big sister and looking after Halle.
We were connected to The Shepherd Centre shortly after Mia’s birth and have found them to be an incredible support for our family ever since.
The Shepherd Centre is a NSW-based not-for-profit organisation that specialises in early intervention services to help children with hearing loss develop spoken language and listening skills.
At first, I didn’t know what ‘early intervention’ was and found the idea of ongoing appointments with such young children overwhelming. However, it is at The Shepherd Centre that the girls have developed listening skills and are learning to talk and communicate like their normal hearing peers.
From early on Mia and Halle loved their sessions at the Wollongong centre, which is one of five centres across NSW and the ACT. The team are fantastic and they adore the stories, craft and games in their lessons. The girls have had, and still have a lot of work to do with their speech and language.
They have not been as quick to develop speech in the way other their age have, but I can see progress and that is important. It is wonderful to be able to chat to Mia about her day, and listen to Halle sing her made-up songs. They both love music and would dance all day if we had time.
LISTEN: Mamamia Out Loud discuss - do cafe’s and restaurants need to quieten down? (post continues after audio...)
The Shepherd Centre has also been an important support network for both Drew and myself, as parents. They have guided and supported us in the decisions around our girls programs and devices.
In April 2016, Mia had bilateral cochlear implant surgery under Dr Phillip Chang. The Shepherd Centre team were right by our side when considering and finally deciding on the surgery. We couldn’t have done it without their reassurance and knowledge. Halle also had this surgery in June 2017.
The reason this decision was a difficult one was because both Mia and Halle were on the ‘border’ of needing the implant. If their loss was greater, it would have been a clearer choice. The girls both had a lot of what is known as ‘residual hearing’ – and we relied on this for simple communications during bath time and first thing in the morning when their hearing aids were not on. The surgery came with a risk of removing all residual hearing and meant the girls would possibly become profoundly deaf. The thought of removing what hearing they did have was horrible.
However, the girls were missing key sounds in higher frequencies even when their hearing aids were switched on. This would affect future speech and language development and this loss in higher frequencies was also deteriorating and was not great even to start with. Cochlear implants bypass this damaged area and create a clearer sound, so when the devices were on (during all waking hours) the access to sound is much better.
It was a hard decision the first time round, however after seeing Mia’s progress with the implants, the choice was easy for Halle. It is still hard at times – they don’t like the silence of no “buds” (as they call their cochlear implants) when they wake at night – but we are very glad to have moved forward with the surgeries.
In the first year of Mia’s life I didn’t like to talk about the issue of hearing loss. It was almost as though I was hiding it. I didn’t want people to associate hearing loss as the first and foremost aspect of Mia – I wanted them to see her as a gorgeous girl with the world at her feet.
I think it is important for a greater awareness in the general public so other families know they are supported and not judged or pitied when facing a diagnosis like this. The simple fact that remarkable outcomes are possible for children who receive early intervention support is an incredibly important message.
I remember being blown away the first time I was shown a video of a child with cochlear implants speaking. In hindsight, it would have been so helpful to me to have seen that immediately following Mia’s failed hearing screen so I knew what was possible and put my racing mind at ease.
I also think it would be great if new parents, facing a failed screen or a new diagnosis, could be met in the hospital by a mother or father of a child with hearing loss. This is something I would be interested in doing in the future.
Loud Shirt Day, Friday 20th October is an annual, national event when Australians everywhere are encouraged to spice up their everyday outfits and wear their loudest clothing to raise funds in support of The Shepherd Centre – a leading children’s charity giving Aussie kids the gift of speech and sound.
This year we plan to celebrate Loud Shirt Day 2017 by holding a ‘Loud Sock Week’ at our dance school (Tara Becker School of Dance, Wollongong NSW). We will encourage students to wear bright and colourful socks in addition to their regular dance attire and donate to the cause.
It is so important for Australians to get behind Loud Shirt Day because, after all, everyone deserves a voice.
For help with hosting your Loud Shirt Day event, visit www.loudshirtday.com.au, where you can register and download your free Host Kit.
To learn more about The Shepherd Centre, visit shepherdcentre.org.au/.
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