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Tell us a little about your background. How did you come to work at HeartKids? I’d been working in the health promotion space for many years but wanted to move into a role where you can see how what you do really impacts and makes a difference in the lives of those you’re advocating for: in this case the families impacted by Congenital or Childhood Acquired Heart Disease (CHD). What is HeartKids, how did the organisation come about, and what is its purpose? HeartKids is the only dedicated organisation that supports the lifetime journey of the 65,000-plus Australians affected by CHD, a leading cause of infant death in Australia and a complex chronic disease requiring lifelong treatment. Our aim is to help them and their families to lead the most fulfilling life possible and be recognised as the leader in the fight against CHD in Australia. Formed more than 40 years ago, HeartKids started in Western Australia when a group of parents with children diagnosed with a heart defect got together to support each other. Over the ensuing years, each state/territory formed similar groups and we integrated into one national organisation in 2016. Our work is outcome focused, demonstrating real impact for CHD families and the community, comprising four pillars under our ‘AIRS’ model of care: Advocacy, Information, Research, Support. Through our advocacy work, CHD has now been classed as a national health priority with the launch of the National Strategic Action Plan for Childhood Heart Disease. Tell us the story behind the name. Why ‘HeartKids’? The name HeartKids speaks for itself, as we originated to support families of children with CHD, aka heart kids. Predominantly the support service was targeted at babies, young children (heart kids) and their families. HeartKids has grown so much over the past 40 years: from its humble beginnings in WA ... to a national federated organisation that aims to support all those impacted by CHD by expanding our support services to also include teens and adults living with CHD in all states and territories across Australia. How does HeartKids assist children with CHD and their families? HeartKids offers peer-to-peer non- clinical support. It’s important to be a listening ear for parents and extended family often separated by distance and circumstance. We can also assist by providing emergency care bags, food parcels, some financial assistance, referrals to allied health professionals and specific medical equipment when required. We connect families together, so they feel less alone in their journey. Often the heart kids make lifelong friends as they connect with someone else ‘like them’. We also provide information so they can better understand the journey ahead. In the acute phase of treatment, we want to smooth out the bumps in the road as much as possible, as the ride can be rough enough without all the usual day-to-day worries. It really is an emotional rollercoaster. How many children are currently affected by CHD in Australia? There are more than 65,000 Australian babies, children and adults living with congenital heart defects and heart disease acquired during childhood (CHD). CHD is the biggest killer of Australian babies (under one year old). Eight babies are born with CHD in Australia every day – that’s one every three hours – with four young lives sadly lost every week. There’s no known cure, and it’s a lifelong journey. CHD doesn’t only impact the person with it, but also their immediate family, extended family and friends. What are the causes of CHD in children? How is it managed? There are no known causes of CHD. Some can be genetic, while most are just a result of the heart not forming properly in utero. CHD doesn’t discriminate: it can occur at any time even if there’s no history of heart disease in the family. Around 50 per cent of cases won’t require surgery and are just monitored as the child grows. Depending on the complexity of the diagnosis, some will require multiple open-heart surgeries and catheter procedures to repair the heart as the child grows. How does CHD in childhood affect children and their families? The impact on those living with or caring AWARENESS SPOTLIGHT 19 for someone with CHD is immense. It can be a stressful and isolating experience for families as their world changes. Life can change so quickly, and their dreams of parenthood can be very different from the reality of what happens. Having to learn medical jargon and having very different milestones for their children become the norm. It’s not the same for every family, but the financial and psychological demands of caring for people with CHD can affect family systems greatly. Many suffer from PTSD, anxiety, depression, financial hardships and even marriage breakdowns. Depending on their condition, those with CHD may not be able to take part in physical activities and normal peer-to-peer activities (school camps, etc). Due to advancements in medical technology and procedures, more children \\\[with CHD\\\] are living into adulthood. It’s estimated that more than 32,000 people are adults with CHD. This is underestimated, as many are lost to care as they transition from the paediatric to adult healthcare systems. What research is underway in this space? HeartKids over the years has invested more than $3 million worth of funds into a number of research projects: the latest ones can be found at: heartkids.org.au/ page/145/research-projects. In 2020, as part of the National Action Plan for Childhood Heart Disease, the Commonwealth Government through the Medical Research Futures Fund is investing $18 million into six research projects (see link to these projects) that will target the research priorities in the action plan, in particular: • Preventing neurodevelopmental and mental health complications. • Understanding the impact of prenatal and postnatal factors affecting the health of children born with CHD and their families. • Exploring the role of exercise and increased activity in reducing the impact of CHD. How has the Covid-19 pandemic impacted operations at HeartKids? In the early stages of the pandemic, our HeartKids community had surgeries that were delayed – apart from an emergency situation – with follow-up appointments postponed, or telehealth TO PAGE 20 RETAIL PHARMACY ASSISTANTS • FEB 2021