Her Mum’s Story
Download Simone’s Story
Our beautiful little girl Amelie was born in September 2008. As with most new mothers, I was besotted with her. I held her tight, whispered “I love you” and wondered what she made of all the new sounds and sights she was experiencing.
Then on day three she failed her SWISH (newborn hearing) test with a zero reading in both ears! We were told it was probably fluid or bath water in her ears and not to worry, she would more than likely pass her repeat test but a week later she failed the 2nd test as well.
While we waited for the next set of more comprehensive tests we clapped and shouted and even broke a saucepan banging it to see if she would startle to any loud noise but she didn’t, so when her results came back as having a severe hearing loss in both ears we were devastated but not surprised.
Life turns upside down
The next few weeks were a blur of doctors, hospital visits, blood tests, genetic tests, social workers, MRI’s, CT’s, hearing aid fittings, early intervention service visits and information OVERLOAD!! It was so over whelming and at times I felt like I was drowning in questions and decisions when all I wanted to do was enjoy my little girl.
At around 6 weeks I had also noticed that Amelie was not tracking or appearing to fix her vision. She was also incredibly floppy and appeared to have very little core strength. I repeatedly asked doctors about these things to be told it was normal for a new born. But I already had a 2 year old son and I knew something was very different to how he had been as a baby.
We decided to investigate further and a paediatric opthamologist confirmed our worst fears. Structurally there was nothing wrong with her eyes but she could not fix or follow or see anything except light and dark. He gave us two possible explanations, one called delayed visual maturation (Where the optic nerve hasn’t sheathed yet) and which would correct itself with time and the other cortical vision loss (where the brain can not interpret the information being sent to it) that was permanent.
To say my world fell apart that day is an understatement. I had a little girl who didn’t know what her mummy looked like or sounded like, who hated to be held as she was so startled by someone touching her, who arched uncontrollably whenever she was held and who was almost impossible to settle.
I tried to imagine her future
My little girl lived in a silent and black world and there was nothing I could do to help her. Every instinct in a mummy wants to make everything perfect and I couldn’t do anything except sit by her bassinet patting her or gently rocking the bassinet with tears rolling down my face. I tried to imagine her future, how she would cope, how we would cope and it felt at times like my own world had become silent and black too.
When Amelie was three months old we got the further devastating news that her hearing loss had deteriorated to profound so now she could hear nothing even with the highest strength hearing aid.
Where to now?
The only option left for us to explore was cochlear implants so we took her to SCIC to see if she would be a suitable candidate. Unfortunately, Amelie failed the first round of medical investigations so there was a chance that the implants would not help but thanks to the fantastic support of the staff at SCIC, who talked us through every aspect and possible outcome of the procedure, we decided to go ahead with her first implant.
Walking up to meet Professor Gibson and hearing that the implant had been successfully implanted and all 22 electrodes were working perfectly was at the same time the most terrifying and then overwhelming experience of our lives. We spent the next few hours on the phone sharing our news with family and friends. It was so wonderful to finally have some joy to share and many shed tears of happiness with us. Seven months later Amelie had her 2nd implant done and despite a few unexpected complications, it too is working perfectly.
A very bright future!
So fast forward two years on. We now have a little girl who can see and hear!
Amazingly Amelie’s eyesight began to slowly rectify itself when she was 4 months old and thanks to intensive habilitation sessions at SCIC with the fantastic speech therapist Kylie, Amelie has learnt to hear and talk. Despite an incredibly rocky start in life, Amelie is already beyond age appropriate in both receptive and expressive language and she will be starting at a mainstream pre-school next year.
Amelie is a fiesty, determined little girl who is full of life and conversation. I think every parent delights in hearing their child’s first words and sentences but when you do not know if that will ever be possible the joy is indescribable. Thanks to her cochlear implants, Amelie leads a very regular life and listening to her chat to her brothers as they play brings a smile to our face every day.
A few nights ago, when we put her to bed, Amelie put her arms around us and said “Love you to de moon and back Mummy and Daddy”
What greater gift could anyone ever receive?