Thursday, 7 February 2013

A word from an Adult HeartKid - Dr. Michael Toon

I met Dr. Michael Toon through HeartKids Qld when Nigel and I were involved in putting together the photographic financial year fundraising calendars.  He is an Olympic medalist and a Doctor at the Mater Hospital in South Brisbane, using the knowledge and life skills he gained as a 'HeartKid' himself to help others as best he can, with an understanding of how lives are affected by illness, that perhaps some in the medical profession don't have themselves.

Michael is a huge inspiration to children with both congenital and acquired heart disease, proving to them that you can achieve so much in life, despite the limitations that have been placed on them.  I'm so please he agreed to be a guest writer for "Saving Jules".

"My name is Michael Toon and, like Julian, I have endured the challenge of childhood heart disease. I came into the world on April 11, 1979, as the second son of Peter and Lindy at the Royal Brisbane Hospital.

Like most others at that time, the first hint of my heart disease came after a few hours of lying peacefully in the nursery when I began turning blue due to the changes that occur inside the newborn’s heart to adapt to life breathing fresh air.

I was taken to the home of paediatric cardiology in Brisbane at the time, the Prince Charles Hospital and diagnosed following a catheter procedure with Transposition of the Great Arteries. It was to be the beginning of a long association with hospitals over the next three decades and counting. My diagnosis meant that the great arteries carrying blood to my body and lungs from the heart had formed the wrong way around, so my body was being starved of oxygen rich blood that was returning from the lungs. Kind of like a race-car refueling but being stuck in the pit lane.

A crude communication was established to supply me with life-giving oxygenated blood using an emergency catheter procedure to create a hole between the top 2 chambers of my heart. This kept me alive and well until I was big enough to safely undergo open heart surgery when I was nearly 4, again at the Prince Charles Hospital, by Dr Mark O’Brien who performed a Senning Repair to establish a working circulation from my heart’s misplaced arrangement. Dr O’Brien was already known to my father, Peter, through the world of sailing, where Peter had been a competitive yachtsman.

By this stage my family had followed my father’s job as an architecture lecturer to Canberra, where I was able to enjoy growing up normally with my brother playing hockey, riding my bike, skiing in winter and joining the Scouts. At the age of eight I experienced a common complication of my particular surgery when I developed dangerous fast heart rhythms and again had to undergo surgery at Prince Charles to implant a cardiac pacemaker in my belly and started lifelong medication to control my occasional fast heart rates. I had several reoperations on my pacemaker for lead malfunctions and eventually, when we had moved back to Brisbane, had the pacemaker implanted in the regular position in my shoulder in late 1993 when I was big enough.

Apart from the occasional battery change, I am on to my third, I have not had any major surgery since and remain mercifully stable, well and active.

Growing up I was very fortunate to be a part of an active family with understanding from everyone I was involved with to allow me to go at my own pace yet participate fully in everything where a young buy would find trouble and fun. Things began to get difficult for me as I progressed to school in Brisbane where sport became more competitive and I had been advised not to participate in contact sports or overexert myself following my heart palpitation problems.

Olympic Medalist
All of a sudden I was no longer content to be merely participating in organized sport, measuring my activity as I felt necessary, particularly as rugby, a passion in my family that my older brother Matt had eagerly embraced, was compulsory at my new school. I tried sailing, encouraged enthusiastically by Peter but never took to it like he had. Fortunately, Matt had taken up the sport of rowing at secondary school and Peter had noticed that the position of cox was suited to a small, confident, bright person and it might be something worth a try for me, as I was otherwise struggling to fit in. It turned out it was the perfect outlet for my competitive spirit and I pursued the sport through school and afterwards to represent Queensland and Australia, culminating in coxing the Aussie eight at the Athen’s Olympic Games winning the bronze medal. 

My next challenge following this was more study having completed a Bachelor of Pharmacy during my rowing years. My interest in my heart and familiarity with hospitals led me to studying Medicine at the University of Queensland and I now have the privilege of looking after patient’s of my own where I hope I can use my patient experience to better my care of those I am looking after throughout my career.

Dr. Michael Toon
I have been fortunate since becoming more aware of the nature of my heart condition to meet many like me of different ages and backgrounds who have been affected by childhood heart disease. I have found that while the problem is by no means unique, occurring at differing levels of severity in about 1 in 100 children, each person certainly is unique. All, however, share some common attributes.

I have seen an element of tenacity, courage and determination that is developed through the early challenge to survive and flourish. There is also the humour and resilience that comes from long hospital stays, multiple doctors visits and the possession of special cardiac arrangements that are variably understood outside of and even within the world of paediatric cardiology.

I know many younger patients that are the beneficiaries of the outstanding work developed by many doctors over the past half-century to treat complex cardiac problems in the tiniest of babies. I am even more delighted to know many older patients that survived against the odds at times, being the first recipients of new and amazing surgeries, enabling the children to follow them more safely undergo them and be inspired by their success.

I am very aware of how lucky I have been, even as I have had the most unlikely chance outcome of being born with my particular, serious, heart condition.

I have been fortunate to strike a balance in my life with all things to do with my heart and always encourage others like me to do the same. It is essential to embrace life to the full, find what you love to do and pursue it with passion but to maintain respect for your heart and its boundaries to enable you to do what you love to do more fully.

I have found the world of those affected by congenital heart disease to be a lot bigger than I imagined. I am constantly amazed by the stories of the patient’s, doctors and parents and reassured that support is never far and delighted if I have ever been a help to others."

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