I’m Michael and here is a bit about my experience living with congenital heart disease.
While there has been a lot of challenges for me to face in my life, my story is similar to many people’s stories who live with congenital heart disease.
I’d like to begin by expressing my gratitude to all the medical advancements throughout the years made by clever people who work in the fields of medical science and the highly skilled health professionals who have helped to keep me well.
I also like to acknowledge my parents who have been by my side for most of this journey. I can’t begin to imagine how they must have felt.
I was born in rural South Australia and soon after birth I turned a blueish colour and needed support to stay alive. I was born with a heart defect called pulmonary atresia meaning I had a hole between my two atria, a hole between my two ventricles and a missing pulmonary valve. This is the valve that controls blood flow between the heart and lungs so only with heart surgery would I survive. I was transported two hours away to Adelaide and I was three weeks old when I underwent my first open heart surgery. This surgery was to fix the holes and redirect blood circulation in the heart until I got big enough for a pulmonary valve. I recovered well from this, but had a complication with a bacterial infection in my bowel and required two bowel surgeries at about 6 months old.
I again slowly recovered and was finally able to get home permanently.
From what I’ve heard from my parents and what I can remember I was a typical toddler and child and enjoyed playing outside and helping Dad on the farm.
Just before I turned 5 it was time to fly to Melbourne for more open heart surgery and get that pulmonary valve, it was a pig valve.
This valve served me very well for 10 years. I managed to play tennis and Aussie Rules Football, I was competitive and kept up well. Other than the scar on my chest which I was very self -conscious about people would not have known I had these challenges early in life.
However, about a year leading up to my next surgery I started have some trouble with my heart rhythm and would notice I’d get more breathless at training and playing footy.
After some monitoring and tests at 15 years old it was decided I’d travel again to Melbourne for a new adult sized valve this time a human one. This surgery went very well other than a collapsed lung soon after which took some extra recovery time. I still remember being able to get out of the hospital and ride the trams, tour the MCG and visited the Melbourne Zoo.
I felt much better after this surgery and continued playing tennis, cricket and football. I played Cricket and Aussie rules football into my early 20’s.
I did well at school and have had a 20 year nursing career working in different areas and in leadership positions. Early in my career I worked on a cardiac surgical ward caring for people after heart surgery. I even went into theatre and watched open heart surgery twice while working at Royal Adelaide Hospital.
When I was 24 my cardiologist began to get concerned about an aneurysm that had formed around my aorta which is the large blood vessel that comes from the top of your heart and this was near my aortic valve. This had occurred over time due to my condition putting strain on this area of my heart. This was monitored over another 3 years until the aneurysm got to a critical size and surgery was needed. Another reason for waiting was that new valve sparing surgery was being trialled meaning that I could have this surgery and keep my aotic valve and not need an artificial one. I was the 5th person in Australia to receive this surgery, but the first to have had congential heart disease and have a lot of previous surgery on my heart. This made the surgery more difficult and risky. This 3 year period was one of the most anxious times of my life knowing that this surgery was coming up while still managing full time work, relationships and other aspects of life.
When the time came I travelled back to Adelaide for the surgery and again received all the reminders of how risky it was going to be, but I still remember the morning of the surgery letting go of the anxiety and surrendering myself again into the hands of health professionals for what was again a necessary surgery to keep me well.
It was a slow, tough recovery this one. Quite painful after a third opening up of my chest as well as a blood transfusion reaction which took a few days to diagnose and I was very unwell before receiving carefully cross matched blood. I was very grateful to clever haematologists who worked out why I was deteriorating after surgery and got me back on track with my recovery.
I spent time with my parents afterwards, recovering and slowly getting my endurance back.
I flew back to New Zealand and was back to work 7 weeks after the day of surgery.
I got back to living a full, active life and in 2019 I ran two half marathons something I never thought I’d be able to do.
Last year I had trouble with my heart rhythm and had to visit ED twice to be defibrillated back into a normal rhythm. Soon after I was in Wellington hospital for ablation therapy which has mostly sorted this problem. I still have the arrhythmia from time to time but is self corrects itself.
In 2010 when my aorta was repaired the plan was to replace my pulmonary valve at the same time, but the surgery took a long time and it was decided that the valve was working well and potentially a good genetic match for me and they didn’t replace it.
When I was 15 I was told that is the valve may last 10-15 years I’m now 42 so it has well and truly surpassed their prediction.
I recently got a good report from my cardiologist and though I’ll likely need the valve replaced at some point it is still working very well.
For the past eight years, I have been actively involved with the Manawatu–Wanganui Heart Kids committee. Currently, I work part-time for Heart Kids New Zealand as the Heart Adult Support Taituara.
Heart Kids NZ provides support throughout every stage of life, and my role focuses on offering guidance, advice, and a listening ear to heart adults navigating life with a childhood heart condition. This work has been incredibly fulfilling and a true privilege, allowing me to draw on my own life experiences and health knowledge to make a meaningful impact.
