New HeartKids CEO, Mr Rob Lutter, is urging Australians to show their heart in February by helping to raise $650,000 to provide one-on-one support to families impacted by congenital heart disease, in particular parents of newborns undergoing surgery and treatment. Coinciding with Congenital Heart Disease Awareness Day (14 February), HeartKids hopes the initiative will extend their ability to assist up to 3000 new babies expected to be born with the condition this year alone.
Eight babies in Australia are born each day with congenital heart disease. It is a lifelong condition that will affect almost 6,000 new parents in Australia this year alone. It is one of the leading causes of death and hospitalisation in infants, affecting one in every 100 births according to the Australian Institute of Health and Welfare.
There is no known cure and those that survive often require a lifetime of highly specialised medical care. Sadly four young lives are lost each week.
"Having a heart child is a life-changing experience for the whole family. They endure enormous emotional and financial stress," said Mr Lutter.
"HeartKids ensures parents and families are not left to struggle alone while at their most vulnerable. They need our support both in hospital and when they return home, to help navigate these unfamiliar and often overwhelming circumstances."
Mr Lutter commenced as HeartKids CEO on 7 January after more than four years leading the charity's sister organisation in New Zealand. He has been closely involved with HeartKids NZ since the birth of his own heart child Zac, 21 years ago.
HeartKids is Australia's only national charity dedicated to providing lifelong support to babies, children, teens and adults affected by congenital heart disease. All money raised in February will enable more support coordinators to provide families with essential assistance in and out of hospital, as they face emotional, physical and financial challenges throughout their journey.
HeartKids recently helped to develop Australia's first Childhood Heart Disease National Action Plan, which highlights several serious issues that require urgent attention.
Mental health was identified as a major concern, with up to a third of those living with congenital heart disease experiencing anxiety and depression. Additionally, almost 80 per cent of parents whose children have congenital heart disease have profound levels of psychological distress including anxiety, depression and post-traumatic stress disorder.
There is also an urgent need to help those living in at-risk locations, including remote and regional areas, where the burden of congenital heart disease is disproportionately high. The Plan identified that almost half of patients living outside of metropolitan centres are required to travel more than 200 kilometres for specialist treatment and face significant out-of-pocket expenses.
While congenital heart disease is diagnosed in babies and children, survival rates mean there are now more adults than children living with CHD. Unfortunately, more than 50 per cent of those impacted by CHD are becoming 'lost to care' as they transition from paediatric to adult cardiac health services.
There is an urgent need to increase access to quality information, education and support to help ensure people with CHD and their families, regardless of where they live, will have access to information, support and resources when and where they are needed.
Question: Can you tell us about HeartKids?
Rob Lutter: HeartKids is the only national charity dedicated to supporting infants, teens and adults affected by congenital heart disease across Australia. Support is critical at every stage of the journey – from diagnosis and throughout childhood, the teenage years and into adulthood.
Question: What does HeartKids hope to achieve through the month of February?
Rob Lutter: HeartKids aims to raise $650,000 to provide one-on-one support to families impacted by congenital heart disease, particularly parents of newborns undergoing surgery and treatment. Coinciding with Congenital Heart Disease Awareness Day (14 February), HeartKids Show Your Heart will extend HeartKids ability to assist up to 3000 new babies expected to be born with CHD this year alone. All money raised in February will enable more support coordinators to provide families with essential assistance in and out of hospital, as they face emotional, physical and financial challenges.
Question: What is congenital heart disease?
Rob Lutter: Congenital heart disease (CHD) is an umbrella term which covers a range of heart conditions present at birth or acquired during childhood as a result of other illnesses. CHD is one of the biggest causes of death in children under the age of one in Australia.
Question: How does congenital heart disease impact new Australian families?
Rob Lutter: Eight babies in Australia are born each day with congenital heart disease. It is a lifelong condition that will affect almost 6,000 new parents in Australia this year alone. It is one of the leading causes of death and hospitalisation in infants, affecting one in every 100 births according to the Australian Institute of Health and Welfare.
Question: Can you talk us through the support HeartKids offers these families?
Rob Lutter: For children born with or who acquire heart disease, it is a lifetime condition. HeartKids offers support from birth to teen to adulthood to give every heart kid a fighting chance of leading a long and fulfilling life. This includes one-on-one support for parents while their child is undergoing surgery or treatment, as well as information, financial assistance and emotional support both in hospital and when they return home. HeartKids also invests in research, investigating a range of issues including causes through to the mental health impact on children and their families.
Question: How common is congenital heart disease?
Rob Lutter: The birth rate prevalence of congenital heart disease is understood to be approximately 8 to 10 per 1,000 live births. In Australia, there are approximately 300,000 registered births per year resulting in 2,400 – 3,000 babies born each year with a form of congenital heart disease. Approximately 32,000 Australian children have childhood heart disease and there are more than 32,000 adult Australians who have lived with a heart defect since childhood.
Question: What are the treatment options of congenital heart disease?
Rob Lutter: People with congenital heart disease (CHD) face unique challenges, treatment and often repeated surgeries for their entire lives, and support is critical at every stage of the journey.
Question: How can Australians support HeartKids and these families?
Rob Lutter: Australians can support 'Show Your Heart' this February in the following ways:
Donate at www.heartkids.org.au/showyourheart
Set up a fundraising page at www.heartkids.org.au/showyourheart and host an event for your workplace, family or friends
Follow www.facebook.com/HeartKidsAustralia or instagram.com/HeartKids, tag @HeartKidsAust or @HeartKidsAustralia, share hashtags #showyour❤ and #helplittlehearts
Interview by Brooke Hunter