My Brother Robert

When my brother Robert was born, he was diagnosed with a Congenital Heart Defect called ‘Secondary Pulmonary Hypertension’ caused by ‘Eisenmongers’.  He also had a condition called 'Polycythemia'.  Our father and his mother were told that his chances of surviving until he was 2 years of age was slim to non-existent.  Then they said 6.  Then 10.  Then 16.  Then 21.  Then they stopped telling how long he didn’t have and started focusing on how long he could have.  No one really knew, and I grew up having that constantly at the back of my mind.  

Yesterday, my brother Robert passed away.  He would have turned 49 tomorrow.

Our morning had started off like any normal Monday morning.  Nagging the kids to “Get out of bed, you have school and Kindy”, organising lunches and ironing clothes.  Shooing them out of the house to the car, making sure Julian’s wheelchair was in the back and the last minute race for a forgotten bag for Kindy.  Nigel isn’t usually with me on a school run, however he was yesterday as he had a doctor’s appointment, and I am so grateful he was.  After our final stop at Kindy, we decided to stop off at our local Supa IGA so I could pick up a couple of things for dinner and some fruit.  We met up with a friend in the car park and Nigel stayed outside to chat while I went in and picked up what I needed.  

See?  A normal start.

Nigel was waiting at the check-out for me and after a quick goodbye to our friend, we walked out to the car.  Mum rang me just as we had walked out the door; as soon as she asked me where we were and if Nigel was with me, I knew something was wrong, and despite the fact that my Nanna has not been well lately, I knew it had something to do with my big brother.

I know I cried out “No”.  I know I dropped the groceries and I know that if Nigel hadn’t caught my phone as he grabbed on to me, it would have fallen to the footpath as well.  I know my legs went out from under me, and I could feel Nigel’s arms and legs start to shake from having to hold me up.  I know that for a split second I felt grateful we live in the small community that we do when I heard a woman ask Nigel if I was okay, but that faded quickly in my grief.  And I know that for a very long time, I went numb.

We saw our doctor.  Nigel had a blood test.  Both our GP and the nurse expressed their condolences after they asked me if I was okay.  I told the nurse that I was feeling guilty and she wanted to know why.  I told her that the night before I had rung my Dad for Father’s Day and he told me Robert had called him too.  He said that Robert was having trouble losing weight, and I got irritated.  I told my Dad that it was because my brother didn’t look after himself.  He smoked and he didn’t always eat properly, even though he had made huge changes in his diet recently.

I was frustrated with my brother, and I let my Dad hear that in my voice.  Our nurse told me, in no uncertain terms, not to be silly.  She told me what Nigel had been trying to say, but hearing it from someone detached from us made it so much easier to hear.  She told me that I got irritated and frustrated because of how much I loved Robert, and how much I cared about him and his health, and that it was okay to have felt that way at that time.  I shouldn’t feel guilty, because the frustration and irritation stemmed from love.  It helped to hear that.

This morning I woke up angry with Robert.  I was angry because he had started smoking at such a young age – he was still a kid – and even though I understand his reasons for starting as a kid, as an adult he had a life with his family to look forward to.  I was angry because he didn’t look after himself better.

And I’m angry because we had drifted apart over the last few years and neither of us stood up and crossed the gap, even though we both had many opportunities to do so.  Despite this gap between us, whenever we did see each other at family gatherings, his hugs let me know how much he still loved his little sis.  His ‘Olki-Mura’.

I wish I could hear his laugh one more time.  When my big brother laughed, he did so with his entire body.  His shoulders would shake, his tummy would bounce, even his arms and his legs would jump up and down.  He had a way of laughing that made you turn and look and wish you were in on the joke.

From the day Julian was diagnosed right up until yesterday, Robert was our ‘litmus’ for Julian.  We used his achievements in life to remind Julian of how possible it is to beat the odds the medical world tells you are against you.

Thank you, Robert, for giving us hope.  We will always remember how you filled your life with as much as you could, how you challenged the limitations doctors tried to place on you.  How you would just shrug your shoulders and say ‘Ah, well, that’s just the way it is’ and keep on going with how you had decided you were going to live your life.

I love you, and I will miss you for the rest of my life.

HeartKids Qld Valentines Day Fundraiser

‘Have a Heart’ this Valentine’s Day and donate to HeartKids Qld’s ‘Have a Heart’ Campaign!

This Valentine’s Day, 6 babies will be born with Congenital Heart Disease (CHD) in Australia, and in the same week, 4 young Australians will die from CHD.  So, this Valentine’s Day, donate your chocolate budget to HeartKids Qld to help support families during their struggle with this tragic disease and help find a cure for CHD!  In return, you will receive a beautiful card to give to your Valentine, letting them know of your decision to help give the gift of life.

This is what your donation can help give a HeartKid:

$10 Comfort Food – A $10 donation will provide an evening meal for a parent while their HeartKid is in hospital.

$25 Care Package – A $25 donation will supply the family of a regional HeartKid with a care bag of essentials for emergencies.

$40 Calm Kit – A $40 donation will supply a HeartKid with a play therapy tool kit providing distraction techniques and pain management strategies for a HeartKid and their parent.

Please, ‘Have a Heart’ and donate now to HeartKids Qld this Valentine’s Day - http://www.heartkidsqld.org.au/have-a-heart/

 

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."