- At 21 Bianca was urged to terminate her baby diagnosed with Down syndrome and a serious heart defect but refused.
- Oliver was born premature, underwent open-heart surgery at 13 weeks old, and spent months in intensive care.
- Now eight, he’s a joyful, dancing, adventurous boy, adored by his family and supported through ongoing hospital care and Starlight Foundation.
Here Bianca Cawthorn,30, shares her own story in her own words.
As he wiggled his hips, I watched my son Oliver groove to the music. ‘Who let the dogs out’ was playing on the speaker – his favourite song.
‘Dance with me, Mum!’ he cried so I got off the couch to join in.
Ever since he was a toddler, Oliver has loved dancing.
Now eight, he loves when we have dance parties in the lounge room with his siblings, Teddy, five, and Loki, three. Seeing Oliver smiling ear to ear makes my heart burst with pride.
He’s come such a long way since he was born.
Aged 21 and pregnant, I’d recently separated from my partner Josh, then 23.
At the 12-week scan, I’d discovered my bub likely had Trisomy 21, otherwise known as Down syndrome
At 16 weeks I had an amniocentesis test, and a week later the diagnosis was confirmed.
I also found out I was having a boy. But there was more news. They suspected my little one also had a heart defect.
‘We’ll have to wait until your baby has grown more to confirm, but it looks likely,’ my doctor said, adding they suspected he had a hole in his heart.
My doctors suggested a termination, unsure about his quality of life.
‘He may not survive the birth,’ they warned.
Leaving the clinic in Darwin where I lived, I burst into tears in the car.
READ MORE: A hug from mum saved my life!
We’re going to get through this, I vowed, cradling my belly.
At my 20-week scan, a paediatric cardiologist confirmed my bub had an atrioventricular septal defect – a hole in his heart.
My mum Melissa, then 42, was with me and clasped her hand in mine as my little baby came into view on the screen.
His heart rate normal, kicking and moving around, with all his fingers and toes, he didn’t look like a baby with a disability.
He just looked like my son.
‘That’s my baby. I want to meet my baby,’ I told Mum, my mind made up.
It was suggested I have my bub in Melbourne at the Women and Children’s Hospital to access the specialists, due to the high risk nature of my pregnancy.
At 30 weeks my little boy stopped growing, so I was flown to Melbourne early to be on bed rest, and my bub’s heart was monitored daily, to make sure it was still beating evenly.
Josh came with me, but had to return to Darwin five days later for work.
Luckily Mum and my aunty Lynette were able to be there, so I didn’t face the journey alone.
Then on May 15, 2017, during a regular daily check, the nurse placed the electrodes on my stomach and her face pinched.
‘Baby’s heart rate is dropping quite low,’ she said. ‘We’re going to have this baby today.’
As she hit the red button on the wall, what felt like dozens of medical staff swarmed the room.
My aunt was contacted, and she raced to my side.
READ MORE: Heroic Harley: ‘Our brave boy was born with half a heart!’
Please let my baby survive, I fretted, as I was taken into theatre.
At 9.33am my baby, who I named Oliver, entered the world via C-section at 34 weeks, weighing 1.4 kilos.
Seeing him kicking and crying, I knew he was a fighter. I couldn’t hold back my tears of joy.
I had just seconds to press a kiss to his head before he was whisked away to the neonatal intensive care unit (NICU) and placed on oxygen to help his tiny lungs.
While I recovered, my aunt went with Oliver.
Mum flew in hours later, and that evening we went to visit Oliver together.
‘Mummy loves you so much’ I said, my heart full as I cradled his tiny body.
He was stable for 11 days, then my world stopped when he went into heart failure. Placed on breathing support, he had medication to manage the fluid on his lungs, until he was strong enough to undergo open heart surgery at 13 weeks old.
He’s so tiny, I thought, fretting as my precious boy was taken in for the op.
Doctors spent eight hours carefully patching up my son’s heart. He was placed in the ICU to recover, then four days later he was moved to the cardiac ward.
Thankfully, we were finally discharged when Oliver was 15 weeks old.
READ MORE: Aussie mum of 13 kids: ‘I’ve spend a decade of my life pregnant’
Back in Darwin, while Josh was supportive, adjusting to life as a single mum was tough.
I was so lucky to have my family around me, and when Oliver was 14 months old, I met Tyler, then 27, online. We had a first date, and sparks flew.
I explained my situation with Oliver openly and honestly from the start, but Tyler was all in.
We soon moved in together, and welcomed our sons Teddy in 2020, and Loki in 2022.
Last year, Tyler, now 34, and I eloped, getting married in Pine Forest, NT.
Oliver, now eight, has grown into the most amazing cheeky little man. He loves school, riding bikes, swimming, and playing with his siblings.
The hospital has become a constant in our lives as, besides his ‘zipper’ scar down his chest, Oliver has other health issues including hearing loss and sleep apnoea, and he has a long-term feeding tube.
Recently his PEG feeding tube became infected, so we ended up in hospital.
For Oliver, the hospital can sometimes be scary, but the Starlight Foundation has helped massively. He loves the Starlight Captains, and playing games, singing and dancing.
Seeing him happy means the world. And we are so excited to take our first family holiday to Queensland in September, thanks to Starlight.
‘I can’t wait for the rides,’ Oliver tells me, beaming widely at the thought of going to the theme parks.
Now I don’t take anything for granted, I’m grateful for every cuddle with my boy.
He’s my little fighter with the biggest heart.
To support Oliver and kids like him visit: starlight.org.au
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