I decided to create 'Saving Jules' in the hopes that other parents will chance upon my blog and discover others on the same journey they are, with a diagnosis of Idiopathic Pulmonary Arterial Hypertension. Yes, we face every day with the knowledge that this may be Julian's last, but what a journey we are on with him!
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".
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.
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
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.
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.
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.
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.
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.
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
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
Dr. Michael Toon
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
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.
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.
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.
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.
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."