Diagnosed with a life-threatening condition, Kye had a helping hand from his guardian angel
Here, Lisa, 36 tells the story in her own words.
￼Lifting the barbell off the rack, I squatted down as close to the ground as I could. Mimicking my every move, my son, Kye, two, was happily crouching beside me. ‘Look at those big muscles,’ I smiled as he dropped down again.
As a personal trainer, I was used to pushing people to their limits. But when I fell pregnant with Kye, I could never have imagined just how far I’d be pushed. After putting my body-building career on hold, my husband, Carlos, now 33, and I decided to start a family.
Falling pregnant in January, 2015, we were over the moon. Picturing our son playing footy with his dad, I was certain we were having a boy. As first-time parents, we couldn’t wait to hear our baby’s heartbeat at our 10-week scan. But as the grainy image appeared on screen, the sonographer remained incredibly quiet.
‘I don’t know how to say this, but you need to go and see your doctor,’ he warned, explaining our bub was showing an increased amount of fluid at the back of his neck. ‘It could indicate Down syndrome, or that something is wrong with his heart,’ he said, shaking his head. ‘Either way, it doesn’t look good.’
Bursting into tears, Carlos and I held each other tight. But back at our GP’s office later that day, there was worse news to come. ‘The best option would be to terminate,’ he said bluntly.
Devastated, I’d already grown so attached to our little boy. There was no way I could part with him now. Reaching out to a genetic counsellor, we wanted to know if our baby had any chance of a normal life. That’s when we found out about further testing we could have to determine the cause of the excess fluid.
Three days later, doctors ruled out the possibility of a chromosome disorder. But the following week we were dealt another devastating blow. ‘I’m afraid he has a condition called Hypoplastic left heart syndrome,’ our specialist said, explaining that the left side of our bub’s heart would never form properly or be able to circulate blood around his tiny body. As long as he was still inside me, my heart would beat for us both.
But once he was born, our boy only had a 30 per cent chance of survival. Facing a lifetime of invasive surgeries, our precious little one’s prognosis looked bleak. Carlos was understandably frightened about our tiny son’s future. ‘It’s normal to be scared,’ I assured him. But I knew that we had to stay strong.
‘I promise everything will be okay,’ I told him. We decided to name our baby Kye, meaning little warrior.
Incredibly, the rest of my pregnancy remained a peaceful and happy experience. With regular check-ups, we were able to keep track of how he was progressing.And from the moment he was born, our boy lived up to his name.
With big blue eyes and wispy blonde hair, Kye came out fighting. ‘He’s the most beautiful thing I’ve ever seen,’ I cried to Carlos. Holding him in my arms for the very first time, I couldn’t believe he was finally here. But the moment was short-lived as he was whisked away to the ICU where he could be closely monitored.
The following day, Kye was taken into surgery where doctors installed a shunt into his heart to help his blood flow to his lungs. As we nervously waited to hear the results, I decided to fill out his birth certificate, naming him Kye Jamie, after Carlos’ cousin. Just then our phone suddenly rang. It was my father-in-law, Trevor. ‘I’m afraid Jamie’s been in an accident and passed away,’ he said, broken. Shocked, we could hardly process what we’d heard. But when we received news that Kye’s surgery went well, we were overcome with relief. It’s as if Jamie let go so Kye could live, I thought to myself.
Sadly, a few days later we found out the shunt hadn’t taken properly, so doctors made two more attempts over the next two weeks. Then, when Kye was three months old, he underwent another procedure as too much blood was being redirected to his heart. Thankfully, this surgery was a success the first time.
More than five months on from his arrival, we were finally able to bring our beautiful baby boy home. Though he suffered from chest infections on and off, he soon settled in to a routine.Now, 18 months on, Kye is the most loving and affectionate little man. Obsessed with swimming and basketball, he takes after his sporty dad.
Though it’s likely he’ll need a heart transplant in the future, we’re trying to take everything one day at a time. With Jamie watching over him as his guardian angel, we know Kye will overcome anything that comes his way. And, no matter how big Kye grows, my heart will always beat for him.
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