for young people with childhood heart disease.

Phoebe 's Story

Phoebe’s Story

Written by Phoebe , 9 November 2016  |  Transposition of the Great Arteries (TGA)  Ventricular Septum Defect (VSD) 

Hi, my name is Phoebe. I’m 18 years old & I am a heart kid. I completed my VCE in 2015 & I’m currently in a gap year enrolled to study Criminal Justice in 2017.  I’m unsure about what career path I want to follow, however I know I will eventually find the right one. There is such a vast range of career paths in this world, its true when people say ‘the world is your oyster’.

I was born in the year 1997 in Victoria.  When I was 24 hours old, I was flown to the Royal Children’s Hospital in Melbourne where I was then diagnosed with 2 congenital heart conditions - Transposition of the Great Arteries & Ventricular Septal Defect.

On Christmas day 1997, my heart stopped. Luckily my cardiologist saved my life by performing a Balloon Septostomy.  This kept me alive until I was strong enough to undergo open heart surgery.   I was sent back to a regional hospital for a few weeks as I wasn’t strong or big enough for open heart surgery.  Most open heart surgeries on TGA babies are done 5-7 days post birth. In February 1998 The Arterial Switch Operation was performed on my heart at the RCH, resulting in a rather large scar permanently marked on my chest.

Growing up, I liked that I had my own identity, that my heart condition set me apart from everyone else. However, I soon felt defined & isolated by the stereotype that the other kids painted of me. I participated in all school sports including cross countries, despite having to walk most of the way.   I always pushed myself during sport lessons, until I could barely breathe, my face turning bright red.

I attempted a number of sports during my childhood including swimming and tennis, as well as 7 years basketball.  In my senior years I played hockey for a local club & the school team, which unfortunately I had to quit due to my health conditions.  During one hockey game I experienced severe chest pain and had to undergo radioactive testing (stress test) to try and find the cause.  The testing came back inconclusive & the pains continue to come back at random.  

I continued to push hard in the class room, despite countless days off annually for the hospital. I thrived in the classroom due to my thirst for educational success.  At high school I found a particular interest in Science, Maths & English.  I received a number of merit awards during my high schooling. Towards the end of high school I found myself growing into, a more confident, independent person which resulted in changes within my social circle for the better.

I never asked ‘Why me?’ For me that feels like ‘Why didn’t someone else have this heart condition instead?’  I wouldn’t wish a heart condition on anyone.  

Instead the words that ran through my head growing up were ‘If only….’.  

‘If only congenital heart defects didn’t exist….’. 

‘If only I was born without any medical conditions……’.

‘If only my condition didn’t hold me back so much…….’.

‘If only I wasn’t so isolated because of my congenital heart defect…’.  

In 2013 I decided to apply for the 2014 HeartKids National Teen Camp, I was previously too anxious to apply.  I attended the National Teen Camps in 2014 & 2015.  These camps changed me into a completely different person.   I wanted to push myself, to learn more about myself, to make new friends, all of these goals were achieved & more.

In 2014, when I arrived at my first camp, my nerves were high and I felt completely out of my comfort zone not knowing anyone.  However, all the other campers I met were super welcoming & by the end of my first day I had a bunch of new friendships I knew would last a life time.

Since meeting these incredible heart kids I have learnt all their stories & the reasons they are who they are today, but most importantly I have learnt that I am not alone. These people have & continue to teach me more about kindness, resilience, strength, family, friendship and leadership. Most of all they taught me how to be proud of my story, of my scar, of the individual I am today.

At the camp I was surprised at the variety of CHD, how others were far more limited in their abilities physically, and how many heart kids were on medication because of their heart. I was surprised that I was one of the most capable & healthy heart kids at the camp.

Initially I wanted to have more impressive heart conditions however I’ve learnt over time that it doesn’t matter what condition you have, the HeartKids community isn’t about competing over who has the most ‘most impressive’ heart condition but about supporting fellow heart kids, friendships & love. Teen Camp taught me more than I could imagine, most importantly it changed my perspective on my heart condition & what it means to be a heart kid. Teen Camp permanently affected my outlook on life for the better.

Since attending HeartKids National Teen Camp, my family & I have become more involved in the HeartKids community. My family & I have volunteered at a number of HeartKids events and this has allowed us to see the dedication so evident in the HeartKids community today, an organisation so close to many people’s hearts.  

At the end of 2015 I became a member of the HeartKids Youth Advisory Committee, which since joining, has become really important to me. This committee’s main purpose is to help connect the HeartKids youth, something I’m very passionate about.  I want all heart kids to have an acceptance of themselves  & to feel empowered by their scar not embarrassed,  like so many heart kids do, including myself at one stage.

In May 2016 I was approached by the local Rotary Club to speak at a charity event which they were holding for HeartKids, with all proceeds going to HeartKids Australia.  Even now I still have people asking ‘was that you at the charity event?’  I am so very proud to be able to say that it was me; that I have a heart defect, that I was able to enlighten so many individuals on who HeartKids is & what it means to be a heart kid.  

Not only was I born with a congenital heart defect, but I was also born with Hemi facial microsomia, which is a facial condition that has a large spectrum of severity & effects.  In early 2015 treatment for this condition required me to undergo reconstructive jaw surgery & wisdom teeth removal.  I had complications during the surgery in relation to medication and my heart conditions. I ended up in hospital for 5 nights instead of the expected 1 or 2. It was definitely the scariest health issue I’ve been through which I can remember.

I was a baby when I underwent my open heart surgery, so this was the first surgery I had undergone that I would remember. Lying there being unable to breathe, unable to stay conscious & having no control over my body’s movements was scary. During the time of the surgery & recovery my family and heart kid friends cared & came to visit me.  It showed me the meaning of true family.

Even now I’m still trying to find the right balance between work & having fun. The balance of how many hours I can work weekly before I become ill again or too fatigued to be in any form productive the next day.  Being a heart kid I’m more prone to illness & I’m fatigued more easily.  I still have people questioning my decisions ‘Why didn’t you go out over the weekend?’ ‘You only worked 20 hours this week, that’s not that much.’ ‘You only work & chill out at home?’  They do not realise the effect my heart conditions has on my body. They don’t know I’ve been sick every month since March this year.

I don’t think about those ‘If only’ sentences as much now.  I am so grateful to be here, to be healthy & to be happy with who I am.  I will always wish CHD didn’t exist, purely for the all those whose lives end too early due to their congenital heart defect.  I don’t wish for anyone to ever have to go through the loss of watching their child, or a friend or loved one die from a heart defect.

In September 2015, the Heartkids Teen Camp family lost a beloved family member who at just 18 years old passed away from CHD. No one can ever really prepare for the loss of a friend, but more importantly another individual who had CHD. It really helps to put everything into perspective.

Instead of ‘If only….’ I now say ‘Because of……’

‘Because of my heart condition, I cherish my life.’  

‘Because of my heart condition, I’ve learnt how lucky I am.’

‘Because of my heart condition, I’ve gained the most incredible second family.’

Because of my heart condition, I was privileged enough to attend HeartKids Teen Camp where I have gained lifelong friends.’

 ‘Because of those I’ve met, I’ve embraced what it means to be a heart kid’

‘Because of fellow heartkids, I’ve learned to love the whole me’

I’ve come to the realisation that my heart condition doesn’t hold me back. It pushes me forward. It’s created a life for me which is so much brighter. My heart conditions have pushed me to be the best version of myself. So many more doors have opened for me because of my heart condition. I have the biggest support base & that’s because of my heart conditions.

My family has always been the only rock in my life, my main support team. My family has taught me right from wrong, shown me love & helped me always change for the better. My parents were always supportive of me, holding my hand through every appointment, though every ECG, ECHO etc. They always taught me that my scar didn’t define me, that it was just a part of my story. My family have always been my personal cheer squad. I wouldn’t be the person i am today without my family’s love & support. Only now, because of HeartKids, my family now consists of two parts:

My ‘normal family’ & my ‘HeartKids family’.  Now I have the most treasured group of friends in my life, both ‘normal’ & those who also have a congenital heart defect, all of who are so pure & genuine. I feel so grateful to have such beautiful people in my life; it makes it even more worthwhile to have gone through the tough times to gain such extraordinary friends.

So to the individual reading this written piece, whether your heart is physically okay or not, love yourself, you are your own version of you. It’s true when people say life will get better, so share your story, be proud of it. Shout it from the roof tops, because it is the reason you are standing here today.  If you’re a heart kid with 1 scar or more scars, be proud of them! Show them off because your scars are a part of your story, I show mine off every chance I get. I’ve learnt to embrace every aspect of being a heart kid, the good and the bad.

My heart condition has taught me more than I ever thought it would. I’ve learnt that it’s okay to be yourself and to own who you are. It’s okay to be proud of what makes up you, because I’ve found although I have a heart condition, I am NOT my heart conditions. I am someone that loves biology, a big Harry Potter fan, an avid tea drinker and obsessed with Criminal Justice TV shows. I am someone who is passionate about continuing to be a part of HeartKids, to help HeartKids as an organisation continue to grow & gain awareness. I’m passionate about helping other heart kids learn to gain acceptance from themselves & feel comfortable in their own skin. I am proud to say that I am a heart kid. I have learnt far more about myself in less than 3 years then I ever thought I would in my lifetime. I feel privileged to be a heart kid, because I get to be a part of such a loving & supportive family. I am so incredibly proud of my scar.

Our hearts aren’t the strongest but our mindsets are.  As a heart kid, I know we can achieve anything  we want to do, just in our own way, in our own time. A congenital heart defect isn’t the end; for us, it’s the beginning of something great.

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The mind is everything. What you think you become. Buddha