Wyangle family to give back to HeartKids after their baby boy was diagnosed with congenital heart disease

Determined to push past any challenge that may arise, first time parents Tyla Steward and Dylan Weir are sharing their son's story upon Hero for HeartsKids day in a bid to help others facing similar circumstances.

Miss Steward and Mr Weir found out their firstborn son, Waylon, had congenital heart disease at 22 weeks gestation.

"We were told by Wagga doctors to terminate as it would be a hard road ahead, but that was never an option for us," Miss Steward said.

After being sent to Canberra Hospital, Miss Steward under went an array of tests and had multiple trips to Sydney.

In May of 2022, Waylon was born via an emergency cesarean, taken straight from his mother's womb and rushed into the neonatal intensive care unit in Sydney.

"I was in labour for 12 hours before I under went an emergency cesarean and I didn't get to see Waylon for the first 24 hours," Miss Steward said.

Waylon spent the first two weeks of his life in the Grace Ward at The Children's Hospital at Westmead, over 400km from the family's home in Wyangle, near Tumut, before undergoing his first open heart surgery where it was discovered he had Ventricular Septal Defect (VSD) and Coarctation of the aorta.

After 11 weeks in the Pediatric Intensive Care Unit Waylon spent another 114 days in hospital before the family was discharged to the Ronald McDonald House (RMH) where they would stay for another three months.

With COVID-19 yet another challenge, aside from doctors and nurses, Waylon was only allowed two visitors a day.

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"Only two people were allowed to see him a day and we had to do a test before we could see him," Miss Steward said.

"If someone visited him, dad or I had to miss out."

On Friday Waylon will undergo yet another major surgery to have a stint put in his heart.

"It'll be a big day," Miss Steward said.

"They predict he will need another one when he is three, but anything could happen and it all depends on how he copes. Hopefully after that he won't need another surgery."

Despite a hard start to life, Miss Steward said you would never know what Waylon has been through by just looking at him.

"He's cheeky and very full of life," she said.

"It's a hard journey but you'd be surprised at how resilient your baby is, they are the strongest little people."

Miss Steward said having to be away from their family and friends, they relied heavily on the support given to them by HeartsKids support worker Joanna Harb - who knows all too well the struggle the family was facing.

"Our support worker Joanna was amazing. I always had a shoulder to cry on, she helped us with food vouchers, answering all of the questions we had and just anything and everything you need," Miss Steward said.

"I'll forever be grateful for her."

Knowing how hard it was on her family, Miss Steward and Mr Weir are doing their own work to give back.

"We have raised $2000 so far to help Heartskids," Miss Steward said.

"We know how hard it is being so far away from home and away from your family and money is tight because you have to take a lot of time off work," she said.

"One in 110 babies are born with it. During our time in hospital we met 20 other families going through the same thing who have become close friends because they know what we are going through on another level."

It is for that reason Miss Steward hopes to see communities getting behind Heroes for Heartskids this Friday, a fun-filled event for individuals, corporates, and community groups to dress up as their favourite superhero for the day to raise awareness for seriously ill children and their families who have been impacted by congenital heart disease (CHD).

To donate to the family's fundraiser visit; https://www.hero4heartkids.org.au/my-fundraising/567/waylon-weir.

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