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Jenna - my story as a mum

My daughter has profound bilateral sensorineural hearing loss.

My name is Jenna and I have a 10 month old daughter with a profound bilateral sensorineural hearing loss. Basically she was born without either inner ear structures.

The early screening tests

It all started at the hospital when she failed the hearing screening. She was 1 day old and still covered in vernix so they came back 2 days later to retest. She failed again.

After the first failure I really didn’t think anything of it, but after the second failure, and despite our paediatrician doing her best to put me at ease and give me hope, I knew something wasn’t as it was meant to be.

Two weeks later we had our first 3 hour testing done, in the middle of covid, so no one was allowed to come in with us, and I was told that my baby girl definitely had a severe to profound loss, but there were steps we could take. In all likelihood we’d be on the road to cochlear implants - here’s a bunch of information.

Early supports

So I had the Early Support Service offering to talk things through with me, I had the audiologist telling me things, we started our Hearing Australia journey, and they were giving me information. An NDIS application was prepared for us and sent off. We were strongly recommended to take meetings with both Early Intervention Programs then choose one. Everything was happening at once.

It all came at once

Too many times cochlear implants were talked about as if they were the silver bullet. The fix all. When in reality, no person is guaranteed to be a candidate for the implants; even if you are a candidate for the implants, you may be unable to get them due to other medical concerns; even if you get the implants, they aren’t guaranteed to gain the success you desire; even if you get the implants and they are a success, it is still a long road.

Because so many people were telling me ‘she’d just get the implants, and everything would be fine, she’d hear sounds and talk beautifully – have you seen the youtube videos??’ I assumed to an extent that this was just the way it would be.

When I finally linked up with the Cochlear Implant Clinic they gave me a reality check.

A reality check

Based on my daughter’s anatomy, there was certainly a possibility the implants would be of some use, but it was also possible they wouldn’t help at all. There was no way of knowing without implanting, doing the work, and hoping for the best. But with the strong possibility that the implants would be of limited or no help, I was strongly recommended to bring Auslan into our world so that if there was limited or no success with the implants at least there would be no break or delay in my daughter’s communication.

Deaf in a hearing world

So I threw myself into the beginnings of Auslan and started to come to terms with the very real possibility that my daughter would be totally deaf in a hearing world.

In those early weeks and months, there was a LOT of information coming at me all at once from lots of different sources. I am thankful for the parents who came before me and demanded all of these services, including the infant hearing screening. There was a lot of support instantly, it was amazing and also totally overwhelming.

Coming to terms with it all

From as early as the first hearing screening, I was given a pamphlet for the parent mentor program. And after I came home with my daughter from the hospital, I knew I was going to use it, but I wasn’t ready to make that call yet. Emotionally I was not coming to terms with her diagnosis, even if intellectually I had. My life had been turned upside down in an instant. I had known it would change once my daughter was born, but I had never imagined just how much it could change.

Initially I contacted the parent mentor program because I was having some practical issues with keeping the hearing aids on my daughter, and not the kind that you might assume. She was a few weeks old, and when you put powerful hearing aids on a little baby that you hold in your arms and against your body pretty much all the time, it’s almost impossible to not have the piercing sound of feedback. This was annoying to me and I didn’t want that awful sound to be the only sound my daughter could hear (if she could hear anything at all).

I got some advice but still kept my distance from the program. I was still in denial.

Eventually we spoke a couple more times, and then on mutual agreement I was given a new parent mentor as my first one had experience with hearing aids, but my second, and current parent mentor had experience with cochlear implants, and it was clear by that stage that we were heading down that road.

Parent mentors make a real difference

Whilst it did take me weeks to contact them, and months to truly embrace the support network, it has proven invaluable. I can pick up the phone and talk to someone who understands the good times and the hard times, all because they have been there themselves. I can have a cry with total understanding on the other end of the phone, or share some milestone that is irrelevant to parents of hearing children. The words “I get it” and “you’re not alone” are more powerful than I ever realised.

For any parent at the beginning of a journey with a child with hearing loss, whenever you are ready, the parent mentor program can be there for you. Whether your child has a mild, moderate, severe or profound loss, unilateral or bilateral, devices or not, spoken language or Auslan, and anything in between, you don’t have to be alone either.