CALLS to have more community events in the Riverland for families who have children with heart defects has spurred HeartKids SA to host future events in the region.
The calls were prompted by a community Facebook post from Loxton-based mother Amanda Vivian, who wanted to meet fellow ‘HeartKid’ families in the Riverland, and find more HeartKids events to attend in the region.
“I want to be involved in events in the Riverland, but I understand there’s not actually something already in place,” Ms Vivian said.
“We don’t have somebody co-ordinating events in the Riverland currently for children who have heart conditions and their families so I guess I just want to see it happening here.”
Ms Vivian’s son was born with a congenital heart defect and spent the first four months of his life in hospital, so for her, having a community that understands the medical complexities associated with the disease is important.
“I think I’m not the only heart family (or) heart mum who is looking for things to do with other HeartKid families,” she said.
“Because it’s a lifelong condition, it’s something we’re invested in for my son’s whole life, so it’s important to me.”
HeartKids is the only national profit for purpose charity dedicated to supporting children, teens and adults across Australia affected by congenital heart disease (CHD).
The organisation’s SA/NT state manager Tania Potts said there’s not as much support for families in regional areas, and that is why HeartKids is currently working to expand its reach and support to the region.
“Congenital heart disease is one of those diseases that isn’t discriminatory in the sense that it affects people of every socio-economic group right across the state,” Ms Potts said.
“We know there’s plenty of (HeartKids) families right across country areas, and the main support for them is the Women’s and Children’s Hospital in Adelaide.
“We’re working very hard to actually go out to those communities more and more, and provide emotional and financial support.”
Ms Potts, who has 25 years’ experience in fundraising, marketing and management in the not-for-profit sector, said a few different events are already in the works.
One of the first items on the organisation’s agenda is to implement the HeartKids families program, which gives parents and children the information and support needed to deal with a CHD diagnosis.
“It’s really a program designed to help people understand having a child with a very serious illness in the family, and how they can move forward as a whole family unit and support one another,” Ms Potts said.
“It’s an education program where we sit down and go through what CHD looks like when you bring your child home from the hospital, the challenges with that, what happens when your child starts school or kindergarten, what happens when they become a teenager, how to balance a child with a critical condition alongside their sibling, and also how the parents can make time for themselves.”
This initiative has been welcomed by many Riverland HeartKid families, including Loveday-based mother Amy Drogemuller, whose 14-month-old daughter Alora was diagnosed with Transposition of the Great Arteries (TGA) nine hours post-birth.
Ms Drogemuller said the news was an absolute shock for her and her family.
“We’d had a difficult pregnancy with my placenta, so we were already high risk and thought we got through that, and then this diagnosis happened,” she said.
“She had to be medivacced via helicopter to Adelaide before she was even 24-hours-old.
“I couldn’t go with her because I had just given birth (and) you can’t fly that early post giving birth, so we had to drive in the car.
“Our whole world was just turned upside down, so it was pretty crazy.”
Congenital heart defects are the most common types of birth defects, affecting 1 in 100 babies, and those diagnosed, often face unique challenges and repeated surgeries for their entire lives.
But while the experience has left her with some post-traumatic stress, Ms Drogemuller said she was blessed in that Alora doesn’t currently face any specific challenges.
“At the moment, we’re very blessed in that her condition, TGA, generally is a one-off open-heart surgery,” she said.
“She has annual cardio appointments to monitor that and to make sure there aren’t any leaks or issues, but most of the studies have shown that survivors of TGA go on to live normal lives, so we’re blessed in that regard.”
Still, while her daughter doesn’t have any ongoing medical treatments, Ms Drogemuller said she wanted to build connections to others with similar experiences, and offer support to them, particularly as Riverland HeartKids often miss out on the experiences those in Adelaide get to have.
“I felt so strongly when we were in Melbourne that I wanted to be involved in this community and when we got back at home and in our everyday lives, we were just so isolated from that,” she said.
“You don’t meet any other parents to normalise your feelings, to talk through your experience, to support other people.
“We’re just very cut off because HeartKids in Adelaide say ‘we’ve got this function coming up’ and we can’t get to that - it’s three hours’ drive and we’ve got to organise everything.
“As she gets older, I would like to advocate for that experience they (Adelaide HeartKids) get.”
Ms Vivian said she also hopes more HeartKid families in the Riverland will be able to connect with each other in future.
“I would just love to see families meeting up regularly,” she said.
“Not necessarily for events, but just being together and supporting each other through life because families and their children who were born with heart defects live huge lives.
“So, I’m hoping to see families unite a bit better in the Riverland.”
To stay up-to-date on future HeartKids events in the region, contact HeartKids SA at 08 8269 3122 or visit (heartkids.org.au).