Sunshine Coast toddler Ledger Jones survives two open heart surgeries
A Sunshine Coast mother has shared the heartbreaking moment she signed her miracle baby boy’s life away to a team of doctors to perform a dangerous open heart surgery, after learning he had just seven days to live.
Sunshine Coast
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A Sunshine Coast mother has shared the heartbreaking moment she signed her miracle baby boy’s life away to a team of doctors to perform a dangerous open heart surgery – after learning he had just seven days to live.
Llnke and Shaun Jones, together for nine years, moved to Caloundra on the Sunshine Coast nearly six years ago with hopes of settling down and raising a family.
Mrs Jones, 32, worked as a family lawyer and Mr Jones, 34, was a mortgage broker.
After three years of trying to have baby with no success the couple knew it was time to try something else.
Mrs Jones said the day she was scheduled to start IVF she took a precautionary pregnancy test and couldn’t believe her eyes.
She was already carrying her miracle baby boy. A picture perfect pregnancy followed and nine months later she gave birth to Ledger, ‘the legend’, Jones, at the Sunshine Coast University Hospital, on February 22, 2022.
“I remember the midwife putting him on my chest and breathing deep and falling in love instantly,” Mrs Jones said.
Six hours later and the little family’s dream life came crumbling down.
As they were preparing to take their newborn son home, six hours post birth, one of the midwives thought something about little Ledger’s heartbeat wasn’t quite right.
At 1am the next morning, as floodwaters were rising across Brisbane, the Sunshine Coast, and other parts of SEQ, the hospital staff made the call to send the family to Brisbane on the last ambulance given clearance to take the Bruce Highway.
“I remember crying saying to the paramedic driver ‘you have my entire life in your hands please be careful’. The water was rising and we could hear it coming up on all sides of the ambulance,” Mrs Jones said.
Eventually, at the Brisbane Children’s Hospital, baby Ledger was diagnosed with four heart defects including total anomalous pulmonary venous drainage (TAPVD) and atrial septal defect (ASD).
For two weeks the Jones’ watched on, trapped in Brisbane by the floodwaters, while their miracle baby was poked, prodded and tested as doctors attempted to fix his deadly, unstable heart.
“His condition was complex. The plumbing in his heart was all wrong,” Mrs Jones said.
Here they were connected with HeartKids. The only Australian charity researching children’s heart conditions and offering their families support.
The charity helped the Jones’ find accommodation, left them meals in hospital, and had social workers meet with them for support.
“Then it all went downhill again. They told us either they operate or he has seven days to live in hospital care,” Mrs Jones said.
“We had to sign all of these medical papers noting the risks and acknowledging everything that could go wrong.
“It felt like we were signing his life away but at least we were doing something. We couldn’t just let him die.”
At this stage baby Ledger’s heart was the size of a small strawberry. His first open heart surgery went for 10 hours.
The Jones’ sat outside waiting for the call from the surgeon. A day they’ll never forget.
“I remember the empty hall and it all being very clinical which was a weird contrast when I was so emotional,” Mrs Jones said.
“We couldn’t accept he’d survived until we saw him. They said to be prepared that he wouldn’t look like our baby.
“There wasn’t an inch of him that wasn’t swollen and blue, battered and bruised...his chest was still open from the surgery. He was all sprawled out across the operating table.
“It was horrific but he was alive.”
His parents waited a week to hold him, then eight weeks to finally take him home.
“The moment they put him on my chest again we could hear his heart rate finally slow down on all of the monitors. It was so special to me,” Mrs Jones said.
After a month or so at home, when life was returning to a new normal, it all came crashing down again.
A minor cough and a trip the Sunshine Coast University Hospital emergency room turned into either another choice of open-heart surgery or 24 hours until baby Ledger died.
“This time was different, I’d gotten to know my baby boy,” Mrs Jones said.
“I collapsed and screamed. I remember yelling ‘this can’t be happening again. It’s not fair’.
“We had to sign over his life again. It was like being imprisoned by sterile white walls. He belonged to the hospital more than us at that stage.”
Baby Ledger ‘the legend’ defied the odds, survived his second open heart surgery, and has been living at home with his loving family ever since.
But it hasn’t been smooth sailing and his parents are always prepared for the worst.
One in eight children are diagnosed with just one of his four heart conditions every week. One in four die from it every week.
“It’s a scary statistic and there’s not enough funding going into research,” Mrs Jones said.
“Surgery is a temporary fix. There’s still no cure. We’re living every day knowing it’s not guaranteed.
“Life is better now but we are still very cautious. He can’t go to daycare or risk getting sick.”
Those first six months of baby Ledger’s life had a devastating effect.
“He can’t even walk past a pharmacy without breaking down and screaming no,” Mrs Jones said.
“He takes a long time to warm up to people. It’s hard to explain that not everyone will hurt him.
“He’s a very cheeky, loving and energetic boy. He’s also very empathetic which is beautiful to see considering he was being hurt every half-hour in hospital.
“He’s had to learn to trust the world, that not everyone wants to hurt him, that it’s okay for friends and family to come near him when playing.”
Despite all of this, Mrs Jones remains positive her son will turn this experience into an incredible gift which will propel him forward in life.
“He’ll have to mature a lot quicker and will soon learn he might die from his condition,” she said.
“I worry about him being bullied for his scars and about him not being able to play sports.
“It’s like being in a car crash and waking up with no memory of what happened but covered in scars. As a child he won’t remember this and everything he’s been through. We will hold his memories.”
The Jones’ are raising him to be an advocate and to help others and raise awareness of his conditions.
“He has such a love for life and wakes up so happy. He’s so resilient because of what he’s been through. If he can live through heart surgery twice then he can get through anything,” Mrs Jones said.
“Soon we will start feeding him small pieces of age appropriate information about his heart. We want him to know it doesn’t make him less and that’s he’s a strong kid who just has a different story.
“We want him to be empowered and to feel like he can shine.”
You can support the Jones family and Queensland children suffering from heart conditions by donating to Heart Kids.
“We’re hoping and praying that one day they will find a cure,” Mrs Jones said.
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