As the cold wand glided over my belly, I couldn’t wait to meet my bub.
After being told at 21 I was infertile due to hormone irregularities, I never thought I’d get to be a mum.
So when I fell pregnant in October 2014, my partner Jakob, then 22, and I were ecstatic. But during my first scan at 12 weeks, the sonographer revealed that the back of our baby’s neck was folded, advising it was a common symptom of Down’s syndrome.
‘There’s a one in four chance your baby will have the disorder,’ the sonographer warned.
Broken, I blamed myself, but Jakob remained strong.
‘Whatever we need to do for our baby, we’ll do it,’ he promised me.
Four weeks later we found out we were expecting a little girl.
We’d decided on the name Helena years earlier, which meant bright, shining light.
It’s the perfect fit, I realised.
Then, during an anatomy scan at 18 weeks, my doctor advised us that our girl had skeletal dysplasia, a form of dwarfism that would affect her growth.
It meant that I’d need to undergo scans every two weeks for the remainder of my pregnancy so Helena’s growth could be monitored.
But each time I saw her tiny body on the screen, something else seemed wrong. From club foot to twists in her spine, Helena’s issues were multiplying.
Then at 30 weeks along, my doctor delivered the worst news yet.
Helena’s rib cage was too narrow for her lungs to expand and the tissue surrounding them hadn’t grown adequately for her to be able to survive once she was born.
Devastatingly, it meant our girl was going to be brought into the world only to suffocate shortly afterwards.
‘It might be best that you consider termination,’ the doctor advised.
Distraught, I knew I couldn’t give up on my girl. So we proceeded with the pregnancy and vowed to treasure every minute we had with Helena.
In July 2015, when I was 41 weeks pregnant, I was induced.
Preparing to deliver Helena into a silent room, I could hardly believe my ears as she let out a little cry.
That’s the best noise I’ve ever heard, I thought, as she was placed on my stomach.
Weighing 3.5kg, Helena was noticeably different as I peered down at her short arms and legs. But to me she was just perfect.
After Jakob cut the cord he went with her to the NICU while I was sewn up.
Then we were told to say our goodbyes.
Holding my girl one last time, I told her how much I loved her.
Despite being told she wouldn’t survive, we were amazed the next morning to learn she had made it through the night.
As the days passed, Helena continued to defy the odds and we cherished every moment with our girl.
Then, six weeks after being born, Helena was finally diagnosed with diastrophic dysplasia.
It is a disorder of cartilage and bone development and meant Helena would be of short stature with very short arms and legs.
We were very relieved to find it was a less severe form of her original diagnosis.
Doctors performed numerous procedures to help widen her airway so she could breathe on her own.
She also required casting to help correct her feet and misshapen hips, among other issues.
At four months old, Helena was finally discharged from hospital. But her battles were far from over.
Born with scoliosis and kyphosis, Helena had developed an arched back.
So in April 2019, when our girl was just three, she was to be fitted with a halo brace. The surgery would involve 12 screws being placed inside her skull and connected to a brace that would fit around her head.
The brace would be suspended by a frame, to straighten out her spine.
Although it was heartbreaking to see her in so much pain, we hoped it would help her lead a more normal life.
As she grew used to the brace, Helena was walking around the hospital in no time.
We even learned how to bathe her by placing a bucket of water at the bottom of her frame. Adding bubbles to the water and hanging fairy lights around her frame, it was like her own little spa retreat.
After nine long months the halo was removed in December 2019.
Now aged four, Helena is 50cm tall and likely won’t grow much more.
She also has to wear a body brace for most of the day but she has never let anything stop her.
Our girl is already so intelligent, determined and sassy.
While she can’t play on trampolines or do any strenuous exercise, she’s just like any other child and talks about being a nurse or chef when she grows up.
As she ages, she’ll likely need further procedures on her hips, feet and spine, as they are prone to arthritis.
But we’re committed to giving our daughter all the support she needs in the future.
Each day with our angel is a blessing
