Ash’s Story

Born 1988 with: Tetralogy of Fallot

My parents found out I had CHD when I was 6 weeks old. My mum knew something wasn’t quite right so she had me checked over a few times until someone took her seriously and not just a “first time mum” panicking.

I had my first open heart surgery and full repair at 11months old and my heart just minus my pulmonary valve. I spent a few weeks in ICU in an induced coma. My mum said she remembers seeing me after the operation and was amazed how pink I was, not really noticing me being a “blue baby” until she could compare. I was a patient at the old Camperdown hospital where I would have my check-ups then went out to Westmead.

I saw Dr Shollar and my family and I knick named him “butt, if, maybe” as that was always the result of the yearly check-ups. During school I would always find tops to hide my scar, hated sports as I could never keep up but my parents always made me play anyway and I was always complaining of being tired. After leaving school and becoming an ‘adult’ whatever that means I transitioned to RPA and now see the congenital clinic run by Dr Celerjmer.

I attended university and got a double degree in nursing and early childhood teaching. My passion lies with nursing. During 2013 and my first year as a registered nurse I started noticing symptoms and by early 2014 I was getting so tired I was sleeping 12-16hrs a night, having blue hands/face/tongue, unable to walk very far and palpitations. Being blue my wonderful nurse friends called me smurfette.

I had my second OHS May 2014 at Westmead Private with the incredible Prof Chard.

I am pleased to say I am now part pig and so incredibly grateful to everyone involved in my surgery and recovery. Especially my partner and parents. I am the healthiest, most energetic me I have ever been in my life. I see an exercise physiologist once a week who is amazing and I am getting so strong and crave exercise now.

I now try and promote my story and CHD as far and as wide as I can. The amount of doctors who have said to me “but you’re fixed and fine now right” blows my mind. Or adults that say I am too young for heart problems.

Doing the photoshoot meant a lot to me as I feel like I have come full circle and now embrace my scar instead of hide it.