Little Charlie’s earned 300 bravery beads

When Charlie was born, his battle had only just begun

Melissa Clode, 37, Bruce, ACT

As my unborn bub appeared on the screen, I felt a rush of excitement.  I was at my 20-week scan with my husband Daniel, 43. But then the sonographer spoke. ‘There might be something wrong with your baby’s heart,’ she said, explaining that there could be some abnormalities, but the baby’s position meant it was hard to see properly. 

Along with our kids, William, 14, and Lily, 13, we faced an anxious wait for my next scan. A few days later, we heard the news we dreaded. Our baby had a congenital heart condition and faced a very uncertain future. Until then, my pregnancy had gone smoothly. Daniel and I always wanted three children so we were thrilled when we found out I was expecting again. But now, our delight was mixed with fear.

The doctors couldn’t tell us how poorly our boy would be, let alone if he would even survive the birth. 

…our delight was mixed with fear.

That week, Lily was away at camp so I called her. ‘We’re still going to have a beautiful baby,’ I told her gently. ‘But he’s not going to be the same as others.’ We threw ourselves into learning everything we could about heart problems and even met some affected families through the charity, HeartKids. As I felt a kick beneath my growing bump, it was hard to believe he was a sick baby. We love you so much no matter what, I thought, putting my hand on my tummy.

We decided to call our brave boy Charlie. And while we couldn’t wait to meet our little one, we were terrified we were about to lose him.

On November 10 last year, William and Lily, along with my sister Felicity, 29, joined us in the delivery room at Westmead Hospital. We were all determined to welcome Charlie into the world, no matter how much time we’d have with him.

When we heard his first cry, we were over the moon. To our amazement he looked pink and healthy. 

Charlie battled since day one (Credit: Supplied)

He’s beautiful,’ I said, holding him for a few precious moments before he was whisked away to the neonatal intensive care unit and then to the specialist unit, Grace Ward.

Daniel went with him, texting me a blow-by-blow account of Charlie’s care until I was well enough to join them a few hours later.

The next day, tests showed our boy’s pulmonary arteries, which carry blood from the heart to the lungs, weren’t connected to his heart and didn’t have valves. He also had a large hole in his heart and his aorta was in the wrong place.

Charlie had a ticking time bomb inside him. 

His condition was officially called pulmonary atresia with VSD and MAPCAs overriding aorta. Apart from death, it was the worst-case scenario. Although his heart had adapted, without surgery it could fail at any time.

‘We need his pulmonary arteries to grow before we can fix it,’ the cardiologist said as we tried to take in the devastating news. 

In the meantime, Charlie needed close monitoring. 

But after two weeks of blood tests, scans, tubes and injections, we could finally take our boy home.

Charlie with his dad Daniel (Credit: Supplied)
Charlie, his big sister Lily and I (Credit: Supplied)

We had six wonderful days together before we took Charlie for a check-up. 

At the hospital, tests revealed his oxygen levels were shockingly low. 

The room was suddenly flooded with doctors and nurses as Charlie began frothing at the mouth. Amid the chaos, I refused to let fear overwhelm me. I wanted to focus on being there for him.

‘We need to fly him to Sydney now,’ the doctor said. 

On board the helicopter, I could hear the medical team talking over my headphones. 

He’s hanging between life and death, I realised, terrified. 

While Charlie was eventually stabilised, he needed open-heart surgery. 

The night before his operation, the nurses allowed me to have a quick cuddle. 

Gazing at Charlie’s beautiful face, covered in tubes, I wondered if this would be our final goodbye. But as I held him, his oxygen levels suddenly rose. 

‘You can hold him for as long as you like if his oxygen level does that!’ the nurse smiled. I didn’t let go of him for seven hours.

Thankfully, eight hours later we were told the surgery was a success. While Charlie suffered a stroke during his recovery, it affected only a small part of his brain. A month later, Charlie and I were nearly ready to go home. 

As he slept, I looked back over his short life and thought about all the needles, tests, tubes, scans and procedures he’d endured.

The hospital had given us beads to mark each and every one, as a sign of his bravery. 

I used his records to help thread them together, one by one. And to my amazement, there were more than 240.

Charlie had this many beads after just a few weeks (Credit: Supplied)

You’re a little battler, I thought, smiling.

While red beads marked blood tests and green fish-shaped beads symbolised procedures, yellow smiley face beads marked his particularly happy days.

But every day is a happy day with Charlie, I thought. 

Back home in Canberra, he reached his 100-day birthday – a big milestone for a heart baby.

Charlie is now four months old and has around 300 bravery beads. Each one symbolises what a little hero he is.

His brother and sister adore him and he’s developing into a cheeky little boy. While he’ll face more surgeries as he grows, we’re very optimistic about the future.

We hope it’s full of smiles.

We’re now looking forward to the future (Credit: Supplied)

Heart Babies

➜ Australia, almost 3000 babies a year are born with a heart defect – that’s eight babies each day.

➜ Around 32,000 children are believed to live with congenital heart disease (CHD) in Australia.

➜ Of these, half will have undergone surgery or still need it to correct their heart defect.

➜ Thanks to medical advances that help babies with heart defects survive, there are now more people over the age of 16 with CHD than under for the
first time ever.

➜ Aussie charity Heart supports children and their families and works with hospitals on projects such as the Heart Beads Program.

Originally published in that’s life! Issue 13 – March 24, 2016

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