Born with a rare condition, Holly has defied doctors’ expectations.
Here, Holly’s mum, Tamara Jackson, 46, Gold Coast, Qld, shares the story in her own words.
Watching my day-old daughter, Holly, sleeping peacefully in the hospital crib beside me, I ached to hold her.
But, with her tiny body snaked in wires, I sought comfort in gently placing my hand on hers instead.
At my 25-week scan, she’d been diagnosed with a rare condition called hypoplastic left heart syndrome.
The doctor explained to my husband, Simon, 49, and me, that the left side of Holly’s heart hadn’t formed properly and wouldn’t be able to circulate blood through her body once she was born.
‘We’ll need to assess her heart once she arrives and she’ll need surgery in her first week,’ he told us.
In February 2015, Simon was by my side as Holly came into the world.
The next day, Simon went home to look after our other children, Kayla, 21, Lily, seven, and Emily six, while our eldest son, Dylan, 17, came to visit me and Holly.
Now, as I stroked her soft skin, Dylan cooed over his baby sister.
‘She’s so small,’ he said.
Suddenly, the beeping from the cardiac monitor attached to Holly started to slow, indicating her heart rate was dropping dangerously low.
Then it sounded a loud warning, which froze me to the spot.
A nurse rushed in to press the red button on the wall, and immediately the room filled with doctors to perform CPR.
‘Is she going to make it?’ I sobbed, as Dylan and I were ushered out of the room.
‘They’ll do their best,’ a nurse assured me.
It took five minutes to restart my newborn’s heart.
And by the time Simon had raced back, Holly was stable.
‘She’ll need her first surgery tomorrow,’ her specialist told us.
How on earth will they operate on something so small? I fretted.
At just two days old, Holly’s heart was the same size as a strawberry.
The following day, I was racked with nerves as my baby was prepped for open-heart surgery – the first in a three-stage process to rebuild her heart and redirect the way blood flowed through it.
I’d held her safe in my body for the last nine months, and now I had to watch her be wheeled into an operating theatre from which she might not return.
‘You can do this,’ I whispered in her ear.
Thankfully, 14 agonising hours later, the surgery was deemed a success.
It was confronting to see her tiny chest still open to accommodate swelling. But sitting next to her cot, I read her stories hoping my voice would help soothe her.
As she slowly recovered, our family relocated to be closer to the Queensland Children’s Hospital.
Having had four children before, Simon and I didn’t realise how much there still was to learn.
But, we were shocked to discover that eight babies are born with congenital heart disease in Australia every day, and it’s the leading cause of child death in the country.
At four months old, Holly was finally well enough for her next big procedure.
Incredibly, two weeks later – after 125 days in hospital – she was finally discharged.
It was a huge relief to be going home, but we knew our daughter’s journey was far from over.
She’d need another op before starting school, and even then Holly’s heart would never be fully fixed.
Still, it was wonderful to see our little girl flourish.
The older kids doted on her and she repaid them with lots of smiles and laughter.
As she got older, she needed regular check-ups, but Holly was terrified of being touched by medical equipment, such as the ‘sticky dots’ used in ECGs and the tight feeling from a blood pressure cuff.
‘It’s just like getting a big hug,’ I explained. ‘And we just have to count to 10 and the dots will be off.’
We always had a bag of lolly snakes on hand too!
By the time she was four, we were talking about her next operation.
‘It will mean you can play more,’ I told her, touching the scar down her chest. ‘You have a very special heart that needs taking care of.’
So, in May 2019, our brave Holly underwent her final surgery to rewire her heart.
While there, a friend gave her a doll that had a little scar stitched in the same place Holly had hers.
Afterwards, Holly took as much care of Mimi as I did of her during her recovery, and they were both released four weeks later.
Back home, her lung capacity increased from 60 to 90 per cent, meaning she was able to run and jump like never before.
In February 2021, Holly started school. She was like all the other kids, just with a very special heart under her new uniform.
Simon and I waved her off, thinking how we never knew if this day would come.
Now, seven months on, Holly, five, is such a happy and affectionate little girl.
She loves playing outside on the swings, blowing bubbles and, like most girls her age, she’s obsessed with watching Frozen.
Though she’ll need medication for the rest of her life and may still require a heart transplant one day, we try not to dwell on the ‘what ifs’.
Until then, Holly is giving everything a go – including the school cross country – and her family will be there every step of the way to cheer her on. ●
Holly’s family were supported by the Children’s Hospital Foundation.
Related stories
Native ad body.
Native ad body.
Native ad body.
