for young people with childhood heart disease.

Caitlan's Story

Living with a scar on my heart

Written by Caitlan, 10 November 2015  |  Tricuspid Atresia  Mitral Valve Defect  Ventricular Tachychardia 

For the first four years of life I could not eat or speak, I was living away from my birth family and was affected by multiple heart and other health issues.

Today, I'm less than a week away from graduating Year 12, I've been a school captain, am a confident singer and enjoy being the second eldest out of five siblings in a loving family with permanent guardians.

To say my journey has had its challenges is an understatement but since being born in Brisbane in 1997 I have learnt that there are always good days and bad days and you just need to take them one step at a time because when you're living with a heart condition, you cannot say you are going to be okay or you are okay. You literally don’t know how long you have to live. 

Let's backtrack to the early years when I was born and diagnosed with a number of serious health issues including tricuspid atresia, ventricular septum defect, mitral valve defect and numerous other medical and developmental issues including growth, an extensive speech delay and a cleft palate. My kind of cleft palate sees the upper palate of the mouth fail to develop correctly leaving a hole covered by skin on the roof of the mouth - which obviously contributed hugely to my early speech and feeding issues, until the age of four when I had an operation to correct it. 

Doctors and hospitals were a big part of my life in those early years with a shunt helping to manage my condition until I was old enough for staff at the Prince Charles Hospital to perform a three-stage surgery over two years to redirect blood flow within my body. These many surgeries, including the hemi Fontan at 6 months old and the fenestrated Fontan completed at 2 years of age, have helped enormously but I continue to have an under development in the right side of my heart and was recently diagnosed with ventricular tachycardia, which is a very fast heartbeat and incorrect rhythm of the heart. If left untreated, it can lead to heart failure and the need for a heart transplant. This can be a side effect of extensive heart surgery and only having one ventricle in your heart. 

As I said, those early years were a haze of treatments, operations and interventions. Because I couldn't eat I was tube fed for four years, I had three open heart surgeries and experienced significant development delays until the age of six. This was the scariest time for my parents and myself. At one hospital checkup, which involved an angiogram, I was given a medication called Ketamine. This caused my heart to stop, which had my parents devastated while medical staff were madly trying to revive me. I was blessed to have gifted medical staff or I would not be here today.

These conditions meant the fun things like sport and active play would always be limited for me and when I do have a go at sport or a physical activity, the "what if" is always on everybody’s mind.

I also had to attend an early intervention unit due to my poor speech and hearing. When I was young we figured my speech would always be very limited, but who would think that now! By the time I had reached Year 7, I had gained the confidence to write and say a speech in front of 300 students. Even though I was the smallest student in Year 7, my peers voted for me to become a school captain. My confidence began to grow and shine. During this time, I finally knew that my loving parents would always support my life decisions and was overjoyed when they were finally granted guardianship. This meant that those close to me, rather than someone who sat behind a desk and reviewed my case every few months, could make decisions for my well being.

In early high school life began to tick by very fast and these normal days became a wonderful distraction from all the challenges of my heart conditions.

Around this time my family and I set out on a great adventure and moved to a remote town near Cape York, in far north Queensland. Before setting of, we spoke with my cardiologist to check the move would be safe for me and while I believe he thought we were mad for wanting to go we got the all clear. During those days we walked to the tip of Australia, fished in remote locations with my dad and made many great friends with the local and Indigenous community.

It was also a time where I explored and nurtured my passion for singing. There would not be too many who could say they have sung a song at the northern most tip of Australia - I have! However, these sunny years of stability and exploration came to a crashing halt just a few months ago after what was meant to be a short visit with my cardiologist. Sadly, this short visit turned into a week in Cairns and then a rushed trip to Brisbane to stay in hospital for two weeks, which then led to a number of weeks having to bunk with my grandparents. While in Brisbane I was diagnosed with the ventricular tachycardia. When my mum and myself arrived at the hospital’s front counter nursing staff were shocked to see us standing there. I still remembered the words to this day. The nurse asked: “Are you sure you are Caitlan?” The nurses told us that we were supposed to arrive at the hospital in a CareFlight helicopter with a nurse escort. Obviously, something had been lost in communication and that did not happen. Anyway, it certainly helped us understand how serious this medical situation was. This tachychardia diagnosis forced a change in all our lives and we've recently moved to a town in Far North Queensland where I can better access specialist care in Cairns.

These twists and turns in life and fate have brought their ups and downs but helped me to realise no matter how full on a situation is there is always the chance to reach your dreams. Already, in our new home I've connected with a wonderful music teacher who knows and supports my dream of being on stage. If you're a heart kid reading this I hope you follow your dreams too and if you'd like to hear my singing go and check out my page  

Related Buzzwords

cleft palate, guardians, moving, school, singing

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