A South Australian pilot program for families impacted by congenital or childhood-onset heart disease (CoHD) is expanding across the nation as an online program in partnership with children's heart charity, HeartKids.
Thanks to a $1 million investment from Malinauskas Labor Government - the first of its kind in Australia - HeartKids has been able to significantly expand vital services for families impacted by CoHD in South Australia, including the Better Beginnings pilot program, comprehensive mental health support, enhanced regional support services, and targeted early childhood intervention programs.
The HeartKids' Better Beginnings pilot program provides early intervention for children from birth to four-years-old with CoHD with or at risk of neurodevelopmental delays, supporting the child's developmental journey and empowering parents with the tools and knowledge to foster growth at home.
Due to the success of the pilot program in SA, Better Beginnings is rolling out nationally as an online program across the next 12 months, and will reach more than 1,500 hundred families impacted by CoHD in Australia. The SA Government's investment means that South Australian families are also able to utilise face to face care including visits with occupational therapists and play therapy as part of Better Beginnings.
Around 50 families in South Australia are currently involved in the Better Beginnings program, with this to grow to around 200 families as the program expands in SA.
Parents Mariella Beynon and Adam Wilson are thankful for the support their three-year-old son Fraser has received as part of the Better Beginnings program.
Fraser was diagnosed with Tetralogy of Fallot with pulmonary atresia before birth, and has had numerous surgeries and challenges early in life, but is now thriving with the support of HeartKids.
The national program will include monthly online educational workshops and local playgroups led by mentors with lived experience, reducing the isolation often felt by families managing complex medical needs and creating safe spaces for children to develop social skills.
Approximately 185 babies are born with CoHD each year in SA, impacting 18,000 South Australians living with the condition. Nationally, a baby is born with CoHD every three hours, and it is one of the largest causes of infant death in Australian babies under one.
Children with CoHD face a significantly higher risk of neurodevelopmental delays compared to their peers, especially those who undergo surgery before their first birthday. These delays can affect cognitive, motor, language, and social-emotional development, creating challenges as they prepare for school.
In partnership with the Women's and Children's Health Network, HeartKids attends weekly paediatric cardiology clinics and outreach clinics to support both metropolitan and regional families impacted by CoHD.
CoHD incorporates a group of abnormalities of the heart and is a general name for any type of malformation of the heart, heart valves or major blood vessels which are present at birth or are acquired during childhood. Defects can range from simple to complex and can occur alone or in groups, depending on how the heart has developed.
February is Sweetheart month at HeartKids, with a particular focus on Valentine's Day which is International Congenital Heart Disease Awareness Day.
As put by Chris Picton
The Malinauskas Labor Government was the first State Government in Australia to fund HeartKids to increase vital services for families impacted by CoHD, setting a powerful example of leadership and commitment to family-centered care. This funding has set the groundwork to improve vital services for these kids and their families.
Once again, South Australia is leading the way in innovative care that provides parents and children with the foundation and support they need.
Thanks to our government funding and the incredible work of HeartKids, children and families across the nation will now have access to the same level of family-centred support being offered right here in SA.
As put by HeartKids CEO, Marcus Sandmann
Early cardiac surgeries, and extended hospital stays can impact cognitive, motor, and social development. HeartKids Better Beginnings program enables children to receive the right support at the right time, giving them the best chance to thrive.
The first years of a child's life lay the foundation for their future. For children with CoHD, early intervention is crucial because they are at a higher risk of experiencing neurodevelopmental delays compared to their peers.
At HeartKids we believe every child deserves the opportunity to reach their full potential, no matter the challenges they face.
Better Beginnings embodies our commitment to supporting children's health, development, and wellbeing. By investing in early childhood supports, we're not just improving health outcomes, we're building brighter futures for children with CoHD across Australia.
As put by Mariella Beynon, mum of three-year-old Fraser, who is part of the HeartKids' Better Beginnings program
Fraser loves playgroup and all his friends there. And now his younger brother Lenny is also part of the HeartKids family. I didn't know we needed this community until we were a part of it. It's a special place for us all.
We have a lifelong journey with CoHD and having this support really means the world to us. Sarah and the HeartKids team are so fantastic and genuinely care for us all. We have so much fun at playgroup and other events. We feel very lucky and can't speak highly enough of the staff at HeartKids and everything they do for us.
