Grant Wells - The Advocate
Sue Tregoning, 33, Queenstown, Tas
I smiled with pride as I watched my daughter dancing under the sprinkler.
Her blonde pigtails bounced as she played.
‘She’ll grow up to be either a ballerina or a demolition expert,’ my hubby Mark, 47, laughed.
But Natty, now five, hasn’t always been so strong and fearless.
On the day our girl was born in May 2009, she came into the world weighing just two-and-a-half kilos.
‘She needs a little help with her breathing,’ the doctor told us, before whisking Natty away.
I’ll never forget that feeling of panic as Mark’s face filled with concern.
‘She didn’t look well,’ he told me. ‘She was really pale and looked different to how I expected.’ Why?
Natty was our first bub and my pregnancy had gone smoothly.
With no idea what was wrong, Mark and I simply had to wait. Hours passed before I was finally taken to the NICU to see our girl.
Her tiny body was encased in a humidicrib beneath a tangle of wires and tubes.
I hesitated as I stepped towards her. Almost too afraid to see. But then, I caught a glimpse of Natty’s face and tears spilled down my cheeks.
She was beautiful.
Yet Mark was right, she was different too.
Natty’s eyes were set wide apart, her jaw was small and I couldn’t see any ears on her little head.
She certainly wasn’t like the other bubs on the ward that day.
And it was a few more hours before we found out why.
‘We believe Natalie has a condition called Treacher Collins,’ the neonatologist explained. It’s a rare genetic disorder that affects growth and development of the head.
It meant Natty was one in 50,000…
The doctors didn’t know why Natty was so special.
She could have inherited the condition from genes passed down from Mark and me, or it could have been the mutation of a gene during conception.
‘Most people with Treacher Collins grow up to lead normal, happy lives,’ the doctor said.
Clasping Mark’s hand I didn’t know how to react. I was so relieved Natty was alive, and yet it felt like I was falling apart too.
What were we going to do?
That night, Natty was airlifted from Burnie Hospital to Hobart and later to Royal Melbourne Children’s Hospital, where she was given specialised treatment.
The next day Mark and I travelled to be with her and felt glad to see her fighting on.
A week later, Natty was given a tracheotomy where a tube was inserted into her windpipe to help her breathe.
She was also given a nasal gastric tube so I could feed her.
Gradually, over the next four weeks, her condition stabilised and we were finally able to take her back to Tasmania.
It was a huge milestone, but it was also just the start of our journey.
For a while we stayed at a Ronald McDonald house while staff at our local hospital got special equipment and training to care for our girl.
By the time we finally made it home with her in October, Mark and I were exhausted.
Adjusting to life with a special needs baby is tough. Natty faced so many challenges.
In the following years she needed operations on her jaw and fat injections in her face.
She also had surgery to correct a cleft palate and a peg tube put into her tummy as a permanent method for feeding her.
But through it all, Natty was so bright and happy.
She had a beautiful smile and when she flashed it at her daddy and me, it made everything worthwhile.
As she grew, her personality really began to shine.
She loves people and would treat everyone she met to a cheeky grin.
Even when strangers stared at her in the street, Natty would charm them with her inquisitive nature.
But although she learnt to walk and run, she never said a word.
Doctors told us it was common for children with Treacher Collins and although with speech therapy and further surgery she might one day be able to communicate verbally, for now all we could do was look at different ways to give our daughter a voice.
But not talking didn’t stop our Natty. She developed her own way of communicating – pointing, gesturing and learning sign language instead.
Happy tears ran down my cheeks the day Natty, then four, pointed to her eye, then drew a heart with her fingers before pointing at me. I love you. It couldn’t have been any sweeter if she had said it in words.
Yes it took our girl a little longer to learn things, but by the time a psychologist came to assess her last year she was developmentally on track.
She started school this year and adores it.
The children love her and she delights in giving hugs to all her new friends.
She knows that she’s a bit different to the other kids, but she doesn’t seem to mind.
She uses a picture board to communicate with the teacher, a system we also use at home.
Aside from her secret language and the peg in her tummy, Natty’s just like a regular five-year-old.
She loves to dance and is always bopping along to songs by Pink.
Before I had Natty I had never imagined what it was like to be a mother to a special needs child.
But now I wouldn’t change a thing. I know my girl will achieve anything she puts her mind to, because she is driven and confident.
The biggest thing Natty has taught me is that when you have inner beauty it shines out of you.
That beauty makes you perfect no matter how you look.
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