As the thump, thump, thump, of my baby’s heartbeat echoed through the room, I glanced at my husband, Donovan, then 27.
That’s the most beautiful sound in the world, I thought, smiling.
Having moved from Auckland to the Cayman Islands three years earlier, we hadn’t planned on starting a family so soon.
But when I fell pregnant in September 2015, we were over the moon.
When we discovered it was a little girl, we decided to call her Luna.
Then, during a routine scan at around 28 weeks, the sonographer revealed that the right side of Luna’s heart looked slightly enlarged.
‘There’s no need to worry, but you should get it checked again once you move back to New Zealand,’ she advised, explaining that the scan wasn’t completely clear.
Around six weeks later, once we’d settled back in Auckland, I was scheduled for my next ultrasound.
This time, though, the look on the doctor’s face told me something was seriously wrong.
He informed us that Luna had a condition called hypoplastic left heart syndrome.
It meant that the left side of Luna’s heart hadn’t formed properly and couldn’t circulate blood around the body.
Our girl was literally missing half her heart.
‘It’s likely she’ll only survive a week outside of the womb,’ he said.
Now, we could choose to abort the pregnancy or opt for palliative care after she was born.
There was a chance she’d be able to have surgery, but they wouldn’t know for sure until after the birth.
We were shattered, but we had to give our girl a fighting chance.
At 40 weeks, little Luna was born via caesarean.
Holding her in the NICU, it was hard to believe how sick she was.
She looked perfect, like a pretty pink marshmallow.
Incredibly, her cardiologist revealed she was well enough for the operation.
So, at just two days old, Luna had her first open heart surgery, where doctors installed a shunt in her heart to help blood flow to her lungs.
Thankfully, 13 hours later, the surgery was deemed a success. But our little girl’s journey was far from over.
Just two weeks later, a CT scan revealed her shunt wasn’t pushed in far enough, so she underwent another open heart surgery to have it fixed.
Defying expectations, Luna was released from hospital seven weeks after being born.
Five months later, our brave girl endured her third open heart surgery to redirect blood flow from her upper body to her lungs.
Afterwards, it was amazing to watch her learn and grow outside the hospital walls.
Referring to the scar on her chest as her zipper, it didn’t faze Luna.
Then, when she was two, we discovered I was pregnant again.
Luna couldn’t wait to be a big sister and kissed my belly every chance she got.
Still, we knew that it was only a matter of time before her final open heart surgery to rewire her heart.
‘You need to have another operation to help fix your special heart so you can run faster and jump higher on the trampoline,’ I gently explained.
Although she’d already been through so much, Luna wasn’t afraid.
‘I can’t wait for doctors to zip me up,’ she’d say.
When the day finally came, in April 2019, I was racked with nerves.
‘I love you more than all the stars in the sky,’ I told her.
Thankfully, the surgery went well.
But three days later, doctors noticed that the fluid in her body wasn’t draining properly and was milky in colour.
A test revealed she had chlyothorax – a rare condition where lymphatic fluid builds up between the lungs and chest wall.
Over the next four months, Luna remained in hospital and her condition only worsened.
Her hair wasn’t growing, her skin was dull and she was severely underweight.
Despite countless tests, doctors were completely stumped as to how to stop the fluid from building up.
By now, it was also sitting around her heart.
It was like her body was drowning itself.
‘You’ll likely only have four more weeks together if her body keeps filling up at this rate,’ doctors explained.
So, in August 2019, just two weeks after welcoming our son, Gray, Donovan and I made the heartbreaking decision to take Luna home to make precious memories together instead.
Back home though, something inside our girl changed.
Doting on her baby brother, she’d shower him in kisses.
Within a few weeks, Luna started eating better, was less breathless and seemed to be improving.
An X-ray showed that there was still fluid on her lungs – but over time, it miraculously started to drain.
Now, aged four, Luna is thriving.
Starting preschool earlier this year, she’s not able to take part in contact sports or be in playgrounds, but she’s loved seeing her friends.
When she’s not running around with Gray, now one, she’s grooving with friends at her dance class.
When we ask what she wants to do when she grows up, she says,
‘I want to be a nurse on the heart ward and help kids like me.’
Our girl may only have half a heart, but it’s certainly the biggest and kindest.
To follow Luna's journey, visit Luna's Little Heart on Facebook.
