Things can be tough when you’re born with a heart that only half functions but Werribee four-year-old Joshua is a wonder child, no two ways about it, and he’s soldiering on like a real trooper.
He’s staring down the barrel of more open-heart surgery in coming months, but things are shaping up well and Joshua’s parents Sharon and David are confident the medical magicians at the Royal Children’s will soon have their little boy on track growing and living like other kids.
It will be a fair weight off their mind. They’ve been through the wringer since learning 23 weeks into Sharon’s pregnancy that their first-born had a serious heart abnormality. Hypoplastic left heart syndrome meant the left side of his heart didn’t develop properly, leaving him essentially with just half a heart.
“I felt like I’d been run over by a truck,” Sharon recalls.
“A week prior they’d told us something was wrong. I wasn’t ever outwardly emotional but I just broke down. At the official diagnosis, I was just numb and quiet, trying to process it.
“They said your child’s situation is quite serious. They gave us three options: termination, palliative care, which meant go through the pregnancy and lose him in a couple of days, or a surgery pathway.
“I’d had this baby living and growing in my belly for 23 weeks. We’re a Christian family, we wanted give him the best chance at life.”
After surviving a harrowing first month in Rosella Ward PICU, two open-heart surgeries and several other complications before coming home, as far as Joshua’s parents are concerned he’s a miracle child.
He goes to kinder and loves tearing about playing with friends. He’s a normal height and weight and, apart from a limited amount of energy, he’s just one more happy kid in the playground.
Others weren’t so lucky, Sharon and David remind themselves.
“He can’t run for very long, he gets very short of breath,” says David. “He has very low oxygen levels which causes a purple tinge to his cheeks.
“But he’s doing very well for his condition and he’s shown lots of signs he ready for the next operation – a Fontan procedure.”
This procedure, which Joshua’s parents describe as “basically a re-plumbing of the heart”, will dramatically improve the flow of oxygen-rich blood to his body and assist his ongoing growth.
Hypoplastic left heart syndrome, an incurable condition, is one of the more complex congenital heart defects, with a high mortality rate in the early years and an average life expectancy of less than half that of a healthy person. However, an increasing number of people with the condition are living with an improving quality of life into adulthood.
“He knows he has a special heart,” says David. “He looks at pictures of himself as a baby. He’s aware of his condition.
“The Royal Children’s Hospital has been incredible, the care we’ve received has been incredible and we owe our son’s life to them.”
Sharon and David say their faith has helped them on their sojourn, as has their heart-healthy second child Nevaeh, just 13 months Joshua’s junior.
“She was a blessing in more ways than one,” says Sharon. “Because I had another babe on the way I had to stay strong and David created a real bond with Joshua as I needed help from them both with the new baby.
“The two children have an indescribable bond. They talk through Joshua’s heart together, they lean on each other.
“It’s been a rough journey but he amazes us every day. We are very aware that we are one of the lucky ones to still have him with us, as we know several families who have lost their heart angels along the way.
“We’ve made the decision to try to honour them and make the most of the hand we’ve been dealt by advocating and raising awareness for several organisations that work with the Royal Children’s Hospital to help improve the lives of children like Joshua, such as HeartKids, Ronald McDonald House and Finnan’s Gift.
“Thank you to everyone who has supported the Good Friday Appeal and the Royal Children’s Hospital in any way. We appreciate you more than you will ever know.”
More: https://www.goodfridayappeal.com.au/news/2024-charity-house-underway/
