ABOUT HEARTKIDS LIMITED

http://www.heartkids.org.au

Our Vision
We aspire to life unaffected by Congenital Heart Disease

Our Mission
To improve the lives and future of those affected by Congenital Heart Disease by providing high quality, caring support, information and advocacy and to give hope by driving world class research

Our Values
Caring, Determination, Collaboration, Integrity, Hope, Family

BACKGROUND
HeartKids Limited formed in September 2016 and builds on 35 years of outstanding support by HeartKids state organisations for children, adults and families impacted by Congenital Heart Disease (CHD). HeartKids is the only charity dedicated to the needs of those affected by CHD and our objective is to support all Australians living with CHD across the lifespan.

RELATING TO SOUTH AUSTRALIA AND CHD
South Australian hospitals do not provide paediatric heart surgery. From the outset, families experience greater inequalities in managing their child's heart disease than other Australians.  On average, two to three families per week travel to Melbourne from Adelaide's Women's and Children's Hospital and Flinders Medical Centre for life giving heart surgery. In some instances, depending on the severity of the case, the family can be given just a few hours' notice. Relocation to Melbourne can be anywhere from a two-week period up to many months at a time. If the child undergoes a heart transplant, relocation can be up to a year. No matter the scenario, CHD has a significant impact on people's personal and financial lives.

HeartKids has proven its ability to provide much needed support to families negotiating their CHD conditions, here in South Australia. We have established excellent support programs and developed effective relationships with the medical experts at the Women's and Children's Hospital in Adelaide, the Pt Augusta Hospital and the Royal Children's Hospital in Melbourne.

In the 15/16 Financial Year, HeartKids in South Australia have:

• provided more than 1,500 hours of in-hospital support;
• supported 111 families who needed to travel interstate for surgeries
• supported 54 families whose child has died due to CHD, including ten families whose child passed away in 2015-2016 Financial Year;
• supported more than 100 regional families - access to specialised care and to life-saving procedures as well as earlier diagnosis and early treatment have been key to improved survival rates;
• continued to support a total of 933 'active' children with CHD in SA and NT; and

added 79 new families to HeartKids.
In 2017 the demand for our services continues to grow dramatically, as thankfully more of our children are surviving into adulthood, as previously mentioned. Our total financial commitment towards our Family Support Programs increased from more than $250,000 in the 2014/2015 Financial Year to just over $272,000 in 2015/2016. This 8.86% increase is further supported by our total in-hospital hours which increased by 87.5%, using the same comparable timeframe. This is a trend that will only continue to increase as medical research and breakthroughs advance.  HeartKids needs to increase its capacity to adapt to this changing landscape.

Current defining statistics:

• Every day, eight babies are born with heart disease
• Congenital Heart Disease is the greatest killer of babies under the age of one
• Approximately half of children diagnosed with heart disease require surgery to correct the defect, with South Australian families needing to travel to Melbourne for their baby's life-saving surgery
• Each week, more than four children pass away as a result of a congenital heart condition
• A disproportionate number of indigenous children suffer from heart disease, often as a result of rheumatic fever, which is prevalent in many communities - and is 100% preventable
• The Congenital Heart Disease population now has more adults than children
• Congenital Heart Disease is a chronic disease, requiring lifelong ongoing cardiac care with long term outcomes unknown
  
  

We wish to extend our most sincere appreciation to the Corvette Club for supporting HeartKids as its charity of choice.

Maryanne Noon
State Manager SA/NT