Congenital Heart Disease in a nutshell

Australian Statistics

  • 8 babies are born with a heart condition every day in Australia.

  • Congenital Heart Disease is the most common birth abnormality, affecting 1 in every 100 babies.

  • Congenital Heart Disease is the leading cause of death of Australian babies.

  • Some defects are mild, however more than half of all children born with Congenital Heart Disease will required treatment at some stage of life.

  • Around 64,000 children, young people and adults are currently living with a childhood heart condition.

  • There is no known cure.

  • HeartKids is the only national charity dedicated to supporting children, young people and adults with Congenital Heart Disease in Australia.

Facts about my HeartKid

  • Post-natal diagnosis at 13 days of age with a heart murmur, and 19 days of age with severe Aortic Stenosis (unicuspid valve).

  • Emergency Open Heart Surgery at 4 weeks of age (valve repair).

  • Second Open Heart Surgery at 7 months (valve repair).

  • Now has Aortic Valve Regurgitation & mild Left Ventricular Hypertrophy (LVH).

  • Waiting for him to decline further before his next Open Heart Surgery (Ross Procedure). For him, the decline we’re waiting for is increased LVH (size of his heart), and/or reduced physical activity and the ability to keep up with his peers. In practical terms, this could present as not being able to run/scoot/ride as long, episodes of passing out, increased tiredness etc.

  • The Ross Procedure is a complex operation, where his Aortic Valve will be removed and replaced with his Pulmonary Valve. An artificial valve will take this place of his natural Pulmonary Valve. There hasn’t yet been an Aortic Valve replacement developed which can stand the high pressure aortic system and grow with children, hence the need to use his Pulmonary Valve. Those who understand the biology behind this would realise it’s a less than ideal situation, but it’s the only option we have given his Aortic Valve has already been repaired twice.

  • Lifetime of surgery ahead. Best estimates are once he has an adult size valve replacement, Open Heart Surgery will be every 10-15 years, with catheter surgeries most likely in between.

  • If you didn’t know his history, you would have no idea he’s a HeartKid to look at him.

Common Misconceptions

  • Even though HeartKids ‘look fine’ it doesn’t mean they are fine. CHD is very often a hidden disease.

  • HeartKids don’t usually get ‘fixed’. Most get repaired, and have ongoing medical needs.

  • There is no ‘one size fits all’ approach for HeartKids. Each child has their own medical needs, prognosis and day-to-day reality. Some need Open Heart Surgery, catheter surgery, or no surgery. Some need to be on medication, others don’t. Some have restricted activity levels, others don’t.

  • There is no rhyme or rhythm to our son’s heart declines or plateaus. Life with Congenital Heart Disease is completely unpredictable. We never know what each cardiology appointment will bring. His results could be the same as his previous checkup, or we could find ourselves facing the next round of Open Heart Surgery. What we are thankful for is that his last valve repair has lasted A LOT longer than predicted.

The Future

  • Unknown. Kids like my son have only been getting repaired for about 30 years. There is no long term data, as there simply haven’t been people living with his condition from birth long enough. We like to make the most of life while we’ve got it.

You might also be interested in these posts:

The calm before the storm - Five and a half weeks ago our son was born. He was incredibly settled and fed well. My husband and I couldn't believe how lucky we were to have another really easy baby. Our daughter absolutely loved him - a completely smitten sister.

The moment - My world was changing before my very eyes and I didn’t even know it. I did but I didn’t. Not to the point that it has. Not to the point where it impacts me day in, day out.

Diagnosis - Diagnosis of a critical and chronic illness is an incredibly traumatic thing to experience, and I still find it hard to write about. Somehow, my husband and I managed to put this video together for our HeartKid’s dedication in 2014, which coincided with his 1st Birthday. This video will give you a good insight into the trauma of diagnosis and how life was for us 5 years ago.