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Townsville Family Benefits From HeartKids

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Congenital heart disease (CHD) is the leading cause of death and hospitalisation in infants, affecting one in 100 births 1 , and it is not uncommon for families to have several children with CHD.

The potential for a genetic link to the condition is now being explored in a new Australian Genomics study, supported by HeartKids, with families impacted by CHD encouraged to participate.

The study’s researchers believe that advanced genetic testing could potentially identify the cause of conditions in up to 50 per cent of families, helping to improve diagnosis, provide better treatment and management outcomes as well as early diagnosis of CHD.

The Kennedy family from Townsville knows all about this.  Little Zoe was diagnosed with Transposition of the Great Arteries, Ventricular Septal defect (medium), Atrial Septal Defect (small), and Patent Ductus Arterioles after she was only a day old.

For Lisa and Aidan Paisley, parents of three young children that have each undergone multiple open-heart surgeries, genetic testing would provide much needed answers.

“When our first child Xander was diagnosed with CHD, we didn’t understand why he had the condition or how it would impact his survival. Doctors told us the likelihood of Scarlett, our second child, being born with CHD would be as rare as being hit by lightning, so we were absolutely floored when we found out that our third child Allegra also had the condition. It’s been an incredibly difficult journey for us but our hope is that this ground-breaking new study will give hope to other families like ours.”

To coincide with International CHD Awareness Month in February, HeartKids aims to raise $500,000 to increase its support services and programs that are not government funded, yet provide a lifeline to thousands of families like the Paisleys. HeartKids is Australia’s only charity dedicated to supporting kids and adults impacted by CHD while also providing vital funds for ongoing research.

Initiatives such as the genetic testing study, funded by the Australian Government’s Medical Research Future Fund through Australian Genomics, were assisted in the early stages through HeartKids grants and its CHD community. Outcomes will be used to inform policy and shape future standards of care, giving access to genetic testing and counselling for affected families.

As the prevalence of CHD rises, so too will its impact on Australia’s health system. HeartKids CEO, Rob Lutter acknowledged the need for greater awareness of CHD and the urgent need to establish a national standard of care, one of a number of recommendations outlined in Australia’s National Strategic Action Plan for CHD.

“HeartKids is working closely with CHD health professional communities to introduce the first ever Australian standards of care for CHD, including world-first neurodevelopmental and mental health standards for those impacted by CHD, recommendations for more specialist CHD health professionals, and access to CHD relevant health services to provide support for those impacted by the disease regardless of their location,” says HeartKids CEO Rob Lutter.

HeartKids’ goal in 2020 is to increase support services and availability of information to help those living in isolated communities, to access family and financial assistance and appoint a new dedicated support person that will be available through a 1800 help line for anyone in need.

“We know that families of babies born with CHD endure enormous emotional and financial stress. As the only national charity providing lifelong support to babies, children, teens and adults affected by CHD, HeartKids ensures families are not left to struggle alone while at their most vulnerable,” said Mr Lutter, who is himself the parent of a heart kid.

Families interested in participating in the study should contact their state based paediatric or adult cardiologist, or Australian Genomics.

‘Show Your Heart’ for HeartKids this February:
 Donate at www.heartkids.org.au. All proceeds go directly to help HeartKids support children
affected by congenital heart disease and their families
 Set up an individual fundraising page at www.heartkids.org.au or host an event for your workplace, family or friends.