Next week my little princess Amelie Scarlet will turn 2. What a journey these last 2 years have been. We have experienced depths of sorrow that I didn’t know were possible to utter elation and incredible joy. As a tribute to the amazing little girl she has become and to the wonderful friends, family and health professionals who have helped us every step of the way I wanted to share her story! It is long but if you do have the time to read it I hope you get a smile out of the unexpected ending.
On the 2nd September 2008 my obstetrician handed me a screaming bundle with the words “Congratulations, you have a beautiful baby girl!” I asked immediately if everything was ok and after she had been checked over was told “she was PERFECT!” I couldn’t believe it as all pregnancy, I had had a funny feeling something was wrong. We had lost a little girl 14 weeks into the pregnancy the previous year so everyone kept reassuring me and saying I was understandably paranoid because of that experience.
For 3 days I lived with a feeling of utter happiness, I gazed at her in wonder, held her and told her I loved her over and over. I looked in to her eyes and wondered what my little girl made of all these new sounds and sights she was experiencing. Then on day 3 she failed her SWISH test (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 with the same result. Again we were told it was probably nothing and she was booked for a full audiological assessment in a months time.
During that month 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 I was devastated but not suprised. 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 and all I wanted to do was enjoy my little girl.
At around the 6 week mark I had also noticed that Amelie was not tracking or appearing to fix her vision at all. She was also incredibly floppy and appeared to have no core strength. I repeatedly asked doctors about these things and was 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.
By the time she was 2 months I was struggling to cope with the fear that there was something far more wrong than a hearing loss so I took her to a paediatric ophthalmologist who confirmed my 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 2 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) which 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. 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 endlessly rolling down my face. I had days where I struggled to get out of bed and other days where I was so so angry that this had happened to my little girl, to my family, and more selfishly to me!! 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 3 months old we got some answers as to what was wrong. She had come back positive for congenital CMV. CMV is a common cold virus which is generally just that- a common cold but if caught for the 1st time during pregnancy it can be passed to the baby and in rare instances have effects on the foetus. Of course it didn’t take long for me to research the condition and to my horror read that some children with CMV are deaf, blind, never hold their head up, sit, walk etc etc. All these things were a very real possibility with the signs Amelie was displaying at this stage. Amelie’s hearing loss had also deteriorated during the last 2 months to profound so now she could hear nothing even with the highest strength hearing aid.
Then at 4 months something amazing happened, I walked in to her room to pick her up for a feed one afternoon and she turned to look at me and she smiled! I thought I was going crazy and moved around a bit and she followed me with her eyes. I was too terrified to touch her in case something changed but I pulled out the musical mobile we had put away under the cot and held it above her bed. She immediately fixed on to one of the animals and watched it go around. I was shaking and crying so much I’m not too sure exactly what happened next but by the time I had called my DH the moment was gone and she was back to staring blankly at the ceiling.
Over the next few weeks her vision appeared to come and go but finally it stayed and her smiles became a beacon of hope that somehow we would make it no matter what lay ahead. At 7 months Amelie still had no head control and she failed a pre test for cochlear implants so there was a good chance that they would not work. Despite this we decided to go ahead with implanting her. Walking up to meet the surgeon and hear if the implant had been successful was the longest walk of our lives, it felt like we were walking the green mile. To our amazement he told us he had successfully got the implant in and all 22 electrodes were working perfectly. 7 months later she had her 2nd implant done and despite a few unexpected complications it too is working perfectly.
So fast forward now to 2 years on. After several operations and hospital stays, intensive physio, speech therapy, feeding clinics, doctors examinations and many boxes of Kleenex we now have a little girl who can see, who can hear, who can laugh, who can understand the family life around her, who can talk in short sentences, who can play with her big brother, who adores her newborn brother, who can hold her head up, who can crawl and even walk in a wobbly way, who loves riding her push trike at the park and who floors us every single day with her determination and love of life.
Amelie is an amazing little girl and I have learnt so much from being her Mummy. In some ways I am more emotional and more vulnerable. I am more in love with my incredible husband who has been an absolute rock every step of the way, my big boy who gave me moments of laughter even on the darkest day and my little boy who reminds me every day of the joy and happiness a newborn can bring to your life. I am stronger after surviving this and I am so indescribably thankful to all of my family and friends who have been so integral in keeping us going particularly in those early months.
Amelie is not the little girl we were expecting but she is still PERFECT and in the words of a doctor who saw her for the 1st time in a year and a half with utter disbelief on his face “this is definitely not the outcome I had expected!!
Submitted my her mother, Simone
Jy