“HeartKids called me very soon after we found out, I hadn’t had Theo, I was still in Mildura. They walked me through what it would look like, down to things like what we should bring to the hospital, what to expect, and they were really supportive and gave me the best practical outlook on what to look for, what we were up against and what was going to happen.”
In a recent Sunraysia Daily article, Tracy credits the support of early detection and HeartKids with helping the family feel prepared during an overwhelming time.
Read the full article here – Trentham Cliffs’ heart warrior
When Tracy went for her routine 20-week scan, they received news that their baby boy, Theo, had been diagnosed with hypoplastic left heart syndrome (HLHS), a serious congenital heart condition. With no prior history of childhood-onset heart disease (CoHD), this news proved to be a challenging time for the Marr family.
Shortly after the diagnosis, HeartKids contacted Tracy, providing essential guidance on what to expect and how to prepare for the journey ahead.
“HeartKids were the ones that gave us the most useful and practical information to move forward and to know what we needed to do to prepare,” Tracy said.
A month before Theo’s birth, Tracy moved to Melbourne to ensure Theo received the best specialised care.
Theo was born at the Royal Women’s Hospital and was quickly transferred to the Royal Children’s Hospital, where he underwent his first open-heart surgery. At four months, he had a second surgery, with a third planned before he turns five.
Now 10 months old, Theo is growing up at home on the family’s farm in Trentham Cliffs with his siblings, Lincoln, Cooper, and Milly.
“We’re really lucky, he’s really quite well and growing and got rid of his feeding tube, which was fantastic as well, he’s eating, drinking and doing all the right things,” Tracy said.
HeartKids is calling for $7.5 million in dedicated government funding to help ensure families impacted by childhood-onset heart disease receive the support they need, when they need it most. Stories like Theo’s show just how vital that support can be.