Life has “changed in a heartbeat” several times for Natalie Whitford and Colin Shallue since a 14-week pregnancy scan of their then-unborn son.
Initially specialists told the Batesford couple that their son Brayden had a severe congenital heart condition called hypoplastic left heart syndrome.
At 22 weeks another scan revealed he did not have the condition.
Instead, he and his parents faced eight different defects, including hypoplastic aortic arch and small descending aorta.
“They had to operate on the aorta when he was three-days-old,” Natalie said.
“In the first 10 months after we got him home he had 78 hospital admissions and appointments with cardiologists, GPs and maternal health specialists.”
Fast-forward to today, Brayden is a chatty four-year-old who says he is “happy and excited” to restart kinder after missing most of his first year due to COVID-19.
A fan of Paw Patrol and Blaze and the Monster Machines, he loves playing in the sand, camping and “anything to do with trucks”, according to mum.
“He’s a very cheeky, fun-loving little boy that’s very gentle with a kind heart,” Natalie said.
“His smile would light up the world. We’re incredibly proud of his progression; he’s a very strong resilient boy.”
But his first two years were challenging for Brayden and his parents.
“We had to lean on each other a lot and trust what the doctors were telling us,” Natalie said.
At 18 months Brayden underwent another major surgery for his heart.
“He took six months to recover and that left him with no muscle tone throughout his body – it still affects him today,” Natalie said.
“When we eventually brought him home he would stand up and fall, which wasn’t good for his chest having just been cracked open.
“We were blessed with an absolute superstar warrior. His determination, strength and fight got us through our bad days.”
Throughout, children’s charity HeartKids supported them with transport, learning about heart conditions to be an “advocate” for their son and introducing them to families in similar circumstances.
“They soon become your strength because they have already walked the path that you’re just starting,” Natalie said.
Brayden sees physio, occupational and speech therapists and, until recently, Natalie stopped working as a logistics scheduler to look after him.
“He doesn’t stop talking but it’s hard for some to understand him,” she said.
“My employer has recently taken me back on a casual basis at night from home.”
COVID-19 lockdown was challenging, with Brayden having no physio for six months. But his physiotherapist helped Natalie design an “obstacle course” to aid his physical development.
Natalie admits she knew little about congenital heart disease (CHD) before Brayden was born, or that 65,000 Australians live with it.
HeartKids expects 3000 Australian babies to be born with CHD in 2021, as on average it impacts one in 100 births.
Natalie encouraged Geelong locals to purchase a $5 heart beads bracelet to support families impacted by CHD ahead of HeartKids Sweetheart Day on February 14.
“That’s why we’re telling our story,” she said.
Details: heartkids.org.au
