Health Stories

Brave Bella – saved by her twin!

The power of a brother's love

Little Bella’s twin brother snuggled her back to life.

Here, mum Simone Pignataro, 42, tells the story in her own words…

Aren’t they cute?’ I smiled to my husband, Greg, as our newborn twins, Jackson and Bella, snuggled up together.

Delivered at 34 weeks, they each weighed just over two kilos and could fit in each of Greg’s hands.

At four days old, we were able to take them home.

Now, despite having their own bassinets, they were happiest side by side.

But while Jackson thrived, Bella didn’t. Her head was elongated and always turned to the left.

Her eyes began bulging, too, and she always cried.

‘It’s probably because she was head down in your womb,’ the paediatrician said, advising me to buy a special pillow to keep her head straight.

So I did, but she cried even more. At four weeks, the twins were examined as part of a study for medical postgraduates.

‘I’m concerned about Bella,’ one said. ‘I think she has sagittal synostosis.’

The condition, which can develop in the womb, causes the hole in a baby’s head to close prematurely.

It could explain her head shape and bulging eyes.

It also meant her brain couldn’t grow properly.

‘That’s why she’s always crying – she’s in constant pain!’ I said.

Specialists at The Children’s Hospital at Westmead, NSW, confirmed the diagnosis, treating her with pain medication and physiotherapy for her neck.

We were told Bella needed surgery to expand her skull, or we risked her having blindness and brain damage.

With our baby girl being so small, she had to wait until she was six months old for the op.

Bella and Jackson

As the weeks passed, Jackson met all his milestones, while Bella deteriorated. Her forehead protruded and her eyes bulged further as her growing brain pushed against them.

When the day finally arrived three months later, we were even more worried.

Bella would be the first baby in Australia to have a spring-assisted cranioplasty, which used springs to expand her skull.

The bones would be separated and tiny springs used to push them apart. It was a risky procedure, but doctors assured us it would give Bella the best chance.

Leaving Jackson with my aunt, Jeneen, at the Ronald McDonald House where we were staying, Greg and I carried Bella to the operating theatre at the hospital. It was the longest walk I’d ever done.

Giving her a kiss before they took her through, I broke down.

‘What if she doesn’t make it?’ I sobbed in Greg’s arms.

She was in surgery for hours. Greg and I wore a track in the carpet, anxiously pacing up and down.

‘Isn’t she out yet?’ I asked a nurse, who shook her head.

Bella's progression photos

Eventually, Aunt Jeneen came over with Jackson.

‘He hasn’t stopped crying, and he won’t eat,’ she said.

‘Poor little fella,’ Greg said, giving him a cuddle.

Then a nurse appeared.

‘Bella’s out but she’s not recovering as well as we hoped,’ she told us gently. ‘Her heart rate’s very fast and her oxygen levels are too low. They’re trying to stabilise her.’

‘Can we bring her twin in to see if that helps?’ I pleaded.

‘No, we can’t have more people in the room,’ she said.

But the surgeon said it was worth a try, so we raced in to see Bella.

I barely recognised her. She lay there unconscious, on oxygen and morphine, her bandaged head swollen like a balloon.

‘Bella?’ I said, but she didn’t respond.

Terrified we were losing her, we lay Jackson by her side. Taking her hand in his, he snuggled right up to comfort her.

Then, to our astonishment, Bella’s vitals started rising right in front of our eyes and her heart rate calmed.

‘He’s pulling her through!’ Greg exclaimed.

‘That’s amazing…’ the doctor said.

‘Well done Jackson!’ I said through my tears.

Eventually, Bella opened her eyes and gave us a beautiful grin.

‘Bella, you’re back!’ I cried, ecstatic. 

In fact, she recovered so well that on the fifth day, she was allowed home.

Bella, Jackson, Jhorjie, Dominic and Olivia

Her eyes stopped bulging, and she didn’t cry constantly. By the time she had the springs removed at nine months, she was a different baby.

She smiled continually, met all her milestones, and on her first birthday, she took her first step.

Over the years, Bella had regular check-ups with Westmead Hospital’s wonderful crano-facial team and, aged 10, she was signed off for good as she had recovered so well.

Now 12, Bella has progressed in leaps and bounds – literally – becoming a competitive contemporary dancer, performing backflips on stage. And she’s become a little soccer superstar.

Jackson, meanwhile, isn’t a sports fan but loves all things technological.

They’re like chalk and cheese!

Their other siblings, Jhorjie, 16, Dominic, 14, and Olivia, 10, know all about Jackson helping Bella.

Even now, he’s protective, sticking by her side whenever she’s unwell.

We’ll always be grateful to the doctors, specialists, and nurses who enabled Bella to grow up to be a happy little girl.

But it’s wonderful to think that it was her twin who pulled her through when she was at her lowest ebb.

Their love literally saved her life.

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