IT was supposed to be a routine ultrasound for pregnant woman Holly Lawler but by the end of it, a devastating discovery saw doctors asking her and partner Tim if they wanted to continue with the pregnancy.

The couple from Ngunnawal had just been told their third child may have a congenital heart disease called tetralogy of fallot.

“[The doctors] explained what can come with [tetralogy of fallot] is DiGeorge syndrome and Down syndrome,” says Holly, 30.

They were told they could choose to continue with the pregnancy and undertake a amniocentesis test after three weeks, or they could terminate the pregnancy.

But Holly was adamant in continuing the pregnancy so just over four months later, Vincent was born.

His first few months were tenuous. He was in and out of hospital and when he was five months old, the couple took him to Westmead Hospital in Sydney for surgery.

At the time, Tim, 36, and Holly were staying at Ronald McDonald House charity accommodation and were in contact with the charity HeartKids. 

HeartKids provided the couple with financial support and connected them through social media to other families experiencing the ramifications of having a “heart kid”.

The hospital trips had been taking a toll on the whole family, and they started to see a change in eldest son Quaid, 5, who would become nervous when Holly would attend specialist appointments three or four times a week, says Holly. 

“Even now I can’t say I’m going somewhere without Quaid thinking something is wrong,” she says.

Holly and Tim spent a quarter of the year apart from their boys, including one month straight while at Westmead and Holly says in that time the boys always asked after their new brother.

And without the HeartKids charity, Holly says parents in Australia with children suffering from congenital heart disease would not cope, which is why they’re hoping to raise $1000 for HeartKids to help children like Vinnie. 

Their fundraising comes ahead of HeartKids’ annual Sweetheart Day on February 14, a national event to raise awareness of congenital heart disease which includes tetralogy of fallot, as well as Vinnie’s first birthday. 

The disease affects eight babies born in Australia every day and takes the lives of four infants each week, making this complex condition with no known cure one of the leading causes of infant death in the country, says HeartKids. 

Holly is now encouraging people to get involved and donate to HeartKids by purchasing special heart bead bracelets which go to support families.

The bracelets symbolise the beads that children like Vinnie receive from HeartKids. Every bead in the chain represents a blood test, a feeding tube, any sort of medical intervention Vinnie has ever had, says Holly.

It’s certain that Vinnie will keep adding more beads to the chain in years to come.

He will eventually need further open heart surgery and could face challenges in his motor function and intellectual development, says Holly. 

But at the moment she says: “He’s pretty switched on [and] out of the three boys he is the cheekiest by far.”

Donations can be made to Vinnie’s Sweathearts campaign here.