- Expecting their first child, Lisa and Curtis were told that there was an issue with their baby’s heart
- Later they learned it was hypoplastic left heart syndrome, a rare and severe defect
- At 39 weeks and three days, their boy was born, and faced open heart surgery at just five days old
Here his mum, Lisa McColl, 30, Brisbane Qld, shares her story in her own words
Placing a kiss on my son’s forehead as he was wheeled into surgery, I fought back tears. ‘Mummy loves you,’ I whispered.
At just five days old, our tiny boy Harley was having open-heart surgery.
My fiancé, Curtis, then 31, and I had been ecstatic when, in September 2020, we’d found out we were expecting our first child.
But during my 20-week scan in February 2021, something felt off.
The scan lasted more than an hour, which seemed longer than the others I’d had. Although things looked okay on screen, my sonographer told me to go over the results with my doctor.
My first pregnancy, I’d assumed everything was normal. But at the doctor’s office the following week, she told me there was an issue with our baby’s heart.
‘You’ll need to go to a specialist to have it confirmed,’ she said, as I left the office in tears.
The next week we went to the Royal Brisbane and Women’s Hospital’s Maternal Fetal Medicine unit, where a cardiologist scanned my stomach, studying our bub’s heart.
I fought to stay still as anxiety pulsed through me.
‘Your baby has hypoplastic left heart syndrome,’ he told us gently, explaining it was one of the rarest and most severe heart defects, where the left side is underdeveloped, making it unable to pump enough blood to the body.
‘Your baby may not survive birth,’ he said.
But if he did, our bub faced three invasive heart surgeries shortly after being born. It felt like my world was crumbling around me.
We were given the option to terminate, or have our bub placed in palliative care.
My baby only has half a heart? This can’t be real, I thought, cradling my belly protectively as the doctor’s words sank in.
Back home, I couldn’t stop the tears. It was the worst week of my life.
‘What do we do?’ I asked Curtis, who was equally devastated.
‘We have to give him a chance,’ he said, laying a hand on my belly as our bub wriggled inside me.
It was tough knowing our son would be fighting for his life from the first breath. But feeling his kicks gave me strength.
In June 2021, when I was 39 weeks and three days, our son, who we named Harley, was born naturally after an induction.
Cradling his tiny body in my arms, I pressed a quick kiss to his head before nurses and doctors rushed our baby into the NICU.
Curtis went with him while I recovered. Then a few hours later I was able to see him too.
Later that day doctors confirmed Harley also had mild tricuspid regurgitation – a leaky heart valve.
He’d need a gruelling six-hour open heart surgery to replumb it.
I was gutted.
While most new parents get to dote on their newborns and dress them in adorable little onesies, I was petrified about whether our son would even survive.
I pressed a quick kiss to his head before nurses rushed our baby into the NICU
Seeing him wheeled into surgery at just five days old was one of the hardest moments of my life.
Thankfully the op was a success and, for the next five weeks, Harley remained in Queensland Children’s Hospital, while he regained his strength.
I read to him every day with books on loan from the Children’s Hospital Foundation’s Book Bunker. Seeing his little smile filled me with hope that he was going to be okay.
In July, we were finally able to go home as a family of three.
It was such a special day.
Weekly Harley’s heart was monitored via an ECG.
At four and a half months Harley went back in for open-heart surgery again. Kissing him goodbye was excruciating as I prayed our baby boy would pull through again…
He has to make it through this, I thought.
Brave Harley recovered in record time and 10 days later we were home again.
Now four, Harley is thriving. While some kids with heart diseases face other health challenges or learning, psychosocial and behavioural difficulties, Harley is doing well.
Our cheeky boy loves playing outside, telling jokes and doting on his nine-month-old sister, Kinsley.
The rare congenital heart defect is caused which the left side of the heart is severely underdeveloped and incapable of supporting the systemic circulation.
What is Hypoplastic left heart syndrome?
‘Mum, let’s play,’ he’ll say, pulling out his blocks.
Harley will undergo his third open-heart surgery before he is five, and although he may still need a heart transplant in the future, we are just taking things one day at a time.
While he doesn’t fully understand what he’s been through, he proudly shows off the scar on his chest that he calls his zipper.
‘I love my zipper!’ he tells me all the time.
It’s a reminder of just how lucky we are that Harley survived.
He truly is our little heart hero!
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