MyHeart.org.au for young people with childhood heart disease.

Pauline - Jack's Mum's Story

Jack’s Story

Written by Pauline - Jack's Mum, 6 December 2016  |  Coarctation of Aorta 

Jack is a young man who has defied the odds and lived. He has overcome huge challenges with his health and he lives an inspired life, loved by many. He has done it with the unconditional love and support of his family. This is his story told by his mum, Pauline.

Jack was born on 22nd July 1998, a baby brother for 3 year old Nick. Both boys appeared healthy at birth and there were no reasons for concern. Jack was a strong determined baby. Both boys suffered with infantile asthma when they were very young and were regularly on medications and on occasion both were on steroids when they were most unwell. This fact alone makes the reality that Jack is still here to tell his story all the more miraculous given the heart condition he had, unknown to us.

Jack was very strong willed from the start and became more so between the ages of 3 and 5 when he started to find his feet. His strong will set him up to conquer challenges later, his strength of character showed itself in kindergarten, and in primary school Jack became a school leader in Grade 6 as had his brother Nick before him.

Jack has remained very strong willed and determined. He did well at school but disliked speaking in front of the class from the start. He pushed himself outside his comfort zone to do it and became a member of the debating team in Year 9. The debating appealed to his love of learning, the ability to speak about something at the level of “expert” and his love of winning.

Nick and Jack played football, soccer, swam and loved riding their pushbikes. We used to walk and ride along the bike track to Knox City on the weekends and enjoy an ice cream or frozen drink there and return in time for dinner.

Jack went to secondary school in 2011 and played football for a local club, which he loved. He only ever mentioned once that the other boys seemed to be able to run further and faster than him, which is why he always passed the ball on both during training and a game. Unbeknown to us, he couldn’t run far or for long due to his heart condition.

In September 2013 Jack had to visit the local hospital to have a small birth mark removed from his back, this is where his blood pressure was measured for the first time and an extremely high reading was found. Jack’s blood pressure was consistently very high that day and we were strongly encouraged to visit our general practitioner the next day to investigate further.

Investigations continued until Christmas Eve 2013 when Jack was finally diagnosed with a coarctation of his ascending aorta. This is a narrowing in his aorta, a birth defect that was not detected until his blood pressure was investigated. The surgeon at an outer suburban large private hospital consulted with us and advised that the narrowing was so severe that it required referral to the Royal Children’s Hospital for surgery sometime in the near future. They were unable to tell us when or even an approximate date. The waiting for us all began on a whole new level as the priority at the Children’s Hospital Cardiology Unit is understandably newborns with heart defects, it made sense the waiting, but didn’t really make it easier. Jack was fourteen years old and against all odds walking around and functioning at a high level despite his diagnosis.

The next day was Christmas Day, we prepared food in a daze making far too many platters for the number of people expected. Looking back, we were all in a mild state of disbelief and shock. This remained until we had a date set for Jack’s procedure.

Jack went to the Boxing Day sales with his dad and he called home to say that he was tired and feeling dizzy and experiencing headaches, only now was he allowing himself to feel the full effect of his heart condition. Jack told me later that he had never felt any different; he had always had headaches and dizziness but had never told anyone. He didn’t realise that everyone else didn’t feel that way. He had just pushed through since he was born thinking this was normal.

I have been through many changes including death, divorce, financial worries, and illness myself, but nothing prepared me for my child being ill. Ironically though, his illness has strengthened me. It has also strengthened Jack and his brother enormously. We have realised that life is worth living for the little things, walking in nature, a loved pet, a companion in life, our children’s health, being there for another human being with compassion, living close to nature.

Jack’s first open heart surgery in April 2014 was a success. The operation took around seven hours. Surgeons widened and patched his ascending aorta, patched and widened his aortic arch and stabilised his blood pressure with medication.

When Jack came home he was on very high doses of medication that had a big effect on him. He experienced hallucinations, nightmares, excessive sweating and very unsettled sleep.

On the way home from hospital, Jack was sitting in the passenger seat with the car window open. He said, “Mum I’d forgotten just how much fun it is ….. just to drive along and feel the sun and the air on your face.” It’s the little things……

That first night home, Jack took my hand and said, “Mum, I’m just so grateful for everything. I’m so grateful for everything you have done, Uncle Bern visiting me tonight, just so grateful for everyone and everything. Thank you”. I shall always remember that moment with great clarity

Whilst this was all happening for Jack, Nick went to work, ate his meals,and carried on his life at a level he could manage, when I imagine his biggest fear of losing his brother was foremost in his mind a lot of times.

Nick coped with what Jack was going through with the support of friends, work colleagues and supervisors, and his family. It became evident after Jack’s second surgery that Nick was struggling emotionally. I realised that he needed support too. I went with him for a drive one Sunday and he admitted to me how difficult it had been and that he felt he had suffered a degree of depression.

Almost 3 weeks after being discharged from the hospital following Jack’s first surgery, his chest wound broke down and he developed an infection. I took him back to my general practitioner with the wound open about a third of the whole incision, he advised antibiotics and to return to Accident and Emergency at the Royal Children’s Hospital. It was the last place Jack wanted to return to at that point and it was an understandably distressing time for him on top of the heart surgery.

Jack was admitted and required more surgery to close the wound. He stayed in hospital for five days and had to be still to lessen the pressure on the stitches and chest area. It was one of the most difficult times for all of us.

After Jack’s chest wound had healed completely and when his energy levels had returned with normal eating re-­‐established, he returned to school. He couldn’t wait to get there to see everyone. I dropped him off in the street near his school and watched him drop into step with his school mates, happy to be back amongst them and they excited to see him.

Jack returned to the Royal Children’s Hospital early in 2015 to check how his heart had repaired and how well it had healed. The assessment at that time revealed some narrowing had returned, tests for what type of stent was required revealed an aneurysm on his descending aorta completely out of the blue. The aneurysm was life threatening. Jack was admitted immediately and put on the urgent list to be operated on within two days. His second open heart surgery took about 10 hours and was a success despite the aneurysm bursting during procedure.

Jack was discharged the Saturday before Mother’s Day 2015, it was the best present. The Royal Children’s Hospital Nurse visited our home every day for six weeks to inject antibiotics into a line in Jack’s upper arm to support healing and so prevent another wound breakdown. I will be forever grateful for their company, care and time during those six weeks.

Jack went back to school slowly, a few days then a full week. His College and his amazing teachers supported Jack to create a plan and some goals to achieve his best for the remainder of his Year 11 school year and about six and a half weeks after his second open heart surgery, Jack partnered his friend to make her deb ball on June 25th, 2015. He was amazing, keeping up with the dances, supporting her and not letting her down.

In October 2015, Jack decided that he wanted to apply for Student Council and other positions of trust at school for Year 12. Jack was voted College Captain 2016.

Jack is hoping to study Engineering at a university of his choice and is doing summer school classes in physics and chemistry to improve his knowledge and skill set to achieve his best.Jack has just finished school and is waiting for his results. He is currently tutoring younger students, bricklaying for a family friend and applying for bar work.

Throughout these past two years we have met the most incredible people. Some planned, some out of the blue.

Throughout Jack’s story – the love and pride his mum has for her boys shines through. We wish Jack and his family all the very best for the future and believe with his drive and determination, and the support of his family, Jack will achieve great things.

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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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Janelle's Story

Janelle’s Story

Written by Janelle, 29 September 2016  |  Atrial Septal Defect (ASD)  Ventricular Septum Defect (VSD) 

Everyday 8 babies are born with a congenital heart defect. On the 13th September 1996, I was one of these babies. Now I’ve just turned 20 and couldn’t imagine my life any other way.

When I was 12 months old doctors told my parents that I had multiple Ventricular Septal Defects (VSD) and multiple Atrial Septal Defects (ASD), these were essentially holes in my heart. At 14 months old I underwent open heart surgery.

Looking back now, I couldn’t imagine how my parents were feeling, watching a small body with an even smaller heart undertaking such a drastic operation, knowing that I would never look the same, that I would forever carry the scars.

My parents have been there for me since day one, and have always supported me pushing myself to my limit, giving everything a go. They taught me to always have dreams, and that I can do whatever it takes to make these come true. They taught me from a young age that I needed to wear my scars with pride, but never let them define who I am as a person and what I can achieve. As I’ve grown up I’ve come to the conclusion that my scars will never define me, but simply allow me to physically see the battles I have conquered, and embrace everything I’ve been through to get where I am today.

I grew up in Perth with my two sisters and two brothers. In 2010 my younger sister Libby was born. It wasn’t until she was a year old that we also found out she had the same condition as myself. Because of this we share a special connection that not many siblings do.

She has just turned six, and is a healthy girl who loves her AFL and her jazz dancing. I graduated from high school in 2013 and went straight into studying at Murdoch University. Ever since I can remember I’ve always wanted to be a teacher. Now that I’m studying teaching, I know I’m one step closer to achieving my dreams.

As most people who have me on any type of social media are well aware, I have an addiction to attending concerts. I try to attend at least one a month, but have attended six concerts in one month earlier this year alone! I find music enables me to express myself in such a positive manner and would recommend it to anyone who needs support and a healthy way to express their emotions.

For a long time, I felt like an outsider with my scars. No one in my friends group had one, and this made me feel really detached growing up. As I entered high school I attended a school that had only five students in my year group. I was very blessed to find out that one of those students also had a congenital heart defect and had gone through open heart surgery.  It was then that I found out about HeartKids and attended my first HeartKids Teen Camp in Queensland 2010.

Most of my spare time during this camp was well spent playing hands and spoons (not much has changed). I honestly cannot express how much these camps have changed my life. I’ve made the most incredible lifelong friends, and feel support in every aspect of my life from each and every individual. The HeartKids Teen Camp has opened my eyes as to how many other people have similar conditions and has helped me talk openly about mine. I was welcomed with open arms by each individual, and I have built strong relationships that I know will last a lifetime.

I would never want another person to ever go through what I’ve experienced, or have a heart condition but without mine, I wouldn’t be the person I am today.  I am forever grateful to HeartKids and to all of the inspirational, strong, kind and loving heart kids I have met throughout my journey. 

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Jaden's Story

I’m proud to have a Zipper!

Written by Jaden, 27 September 2016  |  Hyperplastic Left Heart Syndrome (HLHS) 

My name is Jaden, I am 21 years old and I am a Heartkid. I was born and raised in Far North Queensland and am currently studying a Bachelor of Psychology. I was born with Hypoplastic Left Heart Syndrome that wasn’t diagnosed until I was six days old, and since then I’ve had three major open-heart surgeries and countless stays in hospital. At the age of eleven, I developed Intra Atrial Re-Entry Tachycardia.

When I was young, I didn’t like being different. I was a little girl who just wanted to be normal like the other kids in my class and wanted to do what everyone else was doing. I was always asking my parents, “Why aren’t I good at sport, why can’t I get my ears pierced?” (which I later got done anyway under the watchful eye of my Cardiologist). “Why can’t I do this, why can’t I do that?”.  “Why me?” (that phrase was one I asked a million times).

I was never teased or bullied at school because of my “zipper” or my heart condition; in fact everyone was really good to me and never made me feel left out.  I suppose having half a heart was kind of a cool thing to brag about, but not being able to compete in school sports or run around the oval always made me feel different, like I was missing out on something.

As I got older, I started to (and actually wanted to) understand things a lot more, which lead me to study and complete an Assistant in Nursing TAFE course whilst studying Year 11. By now, I’d began to realise that I couldn’t change who I was, so I might as well embrace every aspect of it: even the seemingly bad things (which were never really as bad as I first thought).  I started believing in myself more and I became much more aware of not only my limitations but of how far I could push myself beyond them and what the consequences might be thereafter.

In 2010 I went to my first ever HeartKids teen camp - and for the first time, I realised that I was not alone. Since then I have organised fundraisers every year for HeartKids, I have been to three more camps and have openly shared my story with other Heartkids, friends and strangers alike. I even love showing off my “zipper”-because I know that without it I wouldn’t be here.

What I’ve been through, what I’ve seen and what I hope to achieve has encouraged me to study Psychology. Once I complete my studies, I hope to work in a hospital and support children born with congenital heart defects, their families and other sick adolescents who are struggling to come to terms with any problems they are facing. Currently, I arrange catch-ups for families in my area who are affected by congenital heart defects, as I am my local area Support Group Leader for HeartKids.

I won’t lie, having a heart condition has restricted me in physical activity; however, even when I was young I always did - and I always will try to - make the best of my situation.  When I was 5, Mum enrolled me into Rhee Tae Kwon Do and I earnt my junior black belt at the age of 11. I also joined a local touch football team but had to slow down when I developed Tachycardia. Recently, I’ve started practicing Yoga and I am always searching for activities that will push me to my limits: I’ve water skied, I’ve done gymnastics and I’ve even zip-lined over a Crocodile the size of Godzilla!

Never in a million years would I change the fact that I was born with a congenital heart defect, because it has provided me with so many opportunities where I have come to understand my body, my heart and life on a much deeper level than most. I’ve had to believe in myself more often than not to be able to get as far as I have. I always try to push myself to the limit in everything I do and I’ve come to realise that, “getting tired”, will never stop me from doing or trying to do what I want, when I want.

Being a Heartkid has taught me to never give up or give in; I haven’t yet and that continues to be the plan!

I am undeniably proud of who I am. I’m proud to be a Heartkid. I’m proud to have a “zipper” and I’m proud to share my story in the hopes that it might help someone else realise that they really can achieve everything they set out to do, despite being born with a congenital heart defect.

To hear more from Jaden  click here to watch her inspiring video!!

Tneil's Story

Sisters

Written by Tneil, 27 September 2016  |  Tetralogy of Fallot (TOF) 

It's great to have something in common with your siblings but my big sister and I have something very special "it's our hearts."

My sister Jackie is 23 years old and she has had four operations to repair her heart. Meanwhile I, at 17 years old have had two. We have Tetralogy of Fallot. It's amazing to think, that we both have the same heart to love each other. She is not only my big sister but my best friend, we share everything, clothes, make up and heart kid friends. We have been on heart camp together and have had a ball.

Sadly, we have also lost some of our heart kids friends together and of course, we both feel the pain. I love my sister and she loves me.

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bond, friendship, love, sisters

George's Story

It’s My Life

Written by George, 27 September 2016  |  Mitral Stenosis 

Hey there! My name is George and I am from Australia. I was born with a heart problem called mitral stenosis which is where the mitral valve doesn't fully open and that restricts the blood flow and causes multiple holes in the heart (VSDs). I was born with many more issues that affected my heart and general health but frankly, the list is a little long and I can’t explain the rest. 

As a little kid, I never really understood why I had a long line down my chest and little, hole scars - in fact, for a while there I thought everyone had a zipper and had ECG’s and Echoes. Then when I was six years old, my mum sat down and explained everything a little bit more to me. She told me about the zipper and the story behind it and I guess that’s where my real life began. When I was nine I was told my mitral valve was stuffing up again and it needed a repair. The biggest part of that news was that it had to be done through open heart surgery. It took two years for it to get to the stage where it had to be operated on but when it came around it really hit me. Being 11 years of age, and having your sixth open heart surgery, well that’s not something anyone wants.

Earlier I told you the list of heart issues that I had was a little too long to go into and let's just say my list of treatments is pretty much the same. Did I mention those SIX open heart surgeries and five cardiac catheters. If you're thinking that after open heart everything else is a walk in the park - well, I'd beg to differ. Cardiac catheters are a special little invention - a long, thin, flexible tube is put into a blood vessel in your arm, groin (upper thigh), or neck and threaded to your heart (two of mine were through my neck and the other three were in my groin). Needless, to say a cardiac catheter is not the most pleasant experience.

By one month old I'd had three open hearts so, I not only have the scar on my chest, I also have two on my back and the fact is, the negative comments I got about my scars as a younger kid were appalling. 

So, with those 11 heart procedures under my belt and scars all over my body I was pretty much left feeling that I was not a normal kid. If I was in any doubt there were usually a few special individuals who'd make sure I clearly understood my differences from other kids in primary school.

Now, I’m 15 years old and loving life. I have amazing heart kid friends and most importantly, I have family. If you have a heart problem, read this and know you’re not alone and if you have friends with one, tell them to read this so they know too.

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Em's Story

Living with more than just a heart condition

Written by Em, 26 November 2015  |  Ventricular Septum Defect (VSD)  Patent Ductus Arteriosus (PDA) 

Hey guys, I just wanted to share my story so other heart kids know that even though they have a heart condition, they can do anything.

Remember, it just may take a long time but you will get there in the end. We all know that life is hard but you just have to keep going, and like Dory in finding Nemo said: “just keep swimming.’’

I was born with ventricular septum defect (VSD) and patent ductus arteriosus (PDA) and I had surgery at 11 weeks of age to help with my heart conditions.

I was also born with an intellectual disability which means maths and school things are really hard. I have also got a condition called severe hip dysplasia which mean that my hip was not covering its socket. Hips might sound like a small problem compared to the heart but I have had four major hip surgeries and three minor hip surgeries and have had to learn to walk four times - the last being seven weeks ago when I had a total hip replacement.

It has been very hard learning to walk four times. Each time I would be in wheelchair for six weeks, then walking frame, then from two crutches to one, then a walking stick, then none.  However, when things were tough, I would also think of all you guys and how strong you are.

The things I most want to get back to will take a long time – let’s face it trampolining is going to take forever.

You heart kids are so brave - so just keep pushing and you will all get there, it just may take some time

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brave, keep going, strong, trampolining

Yineng's Story

Miracles can happen

Written by Yineng, 23 November 2015  |  Atrial Septal Defect (ASD)  Double Outlet Right Ventricle (DORV)  Patent Ductus Arteriosus (PDA)  Pulmonary Atresia  Transposition of the Great Arteries (TGA) 

Hello there, and welcome to a story of hardship, struggles and miracles. But before we get into all that, a little about myself. My name’s Yineng. At the time of writing this, I’m 19, but I might be a little older by the time you’ve come round to reading this. I’m currently doing a full time law and science degree at uni and I think that is killing me more than my heart condition ever will. I enjoy everything from My Little Pony to Game of Thrones and almost everything in between. I am crazy. I am weird. But I haven’t for one moment not been thankful for those who have helped be the person I am today.

I suppose one needs to start at the beginning for this story. I am Chinese. Perhaps you deduced that from my very not-Australian name. I was born in Nanjing, China, in 1996. Who would have known at that time, that little, oblivious me had been born with a heart condition? For all intents and purposes, I was a normal, slightly underweight, healthy baby. Well, until six months later when my mum noticed my lips were beginning to turn blue.

After being rushed to hospital, I was diagnosed with congenital heart disease. In all my total defects number of defects is six: a double outlet in the right ventricle (DORV), transposition of the great arteries (TGA), atrial septum defect (ASD), ventricular septal defect (VSD) and pulmonary atresia (basically born with no pulmonary valve), and patent ductus arteriosus (PDA).

Now, this was 1990s China. The medical technology was poor. Chinese doctors could not save me. “Take your boy home and let him die,” they said to my parents. Not to be dissuaded, my father turned to the one option he could: the budding internet. He put out a plea for help: “Save my dying son.” His English was poor but it was enough. And every day they prayed for someone to see that cry for help, to give them a miracle. Eventually, a miracle did happen.

On the other side of the world, in New Jersey, USA, someone received that plea. Her name was Gloria. Her own son had been born with Childhood Heart Disease (CHD), and after responding to my father’s cry for help, she began making arrangements to try and have me flown to the States for surgery. However, it was not an easy task and took many months. Gloria tried all the hospitals in the area, but none of them would accept a small child from China. Eventually, she turned to the media to try and gain some support. After the story aired of her attempts to save not only me but other Chinese children born with CHD some of the hospitals eventually relented. Once the hospitals agreed, she needed the Chinese Government to agree, as there were still strict laws that prohibited children to fly out of mainland China. The US hospitals had tried for years but still with no success. A Chinese reporter was able to help by translating a heartfelt letter to the Chinese Government and there was eventually agreement to grant travel to children needing treatment. With legal matters secured, it was still problematic financially as someone had to pay for the flight tickets. Eventually Air China agreed to cover the entire costs of the flights, and so I was able to be flown to the USA for heart surgery to save my life.

Gloria then went on to found her not-for-profit organisation, Gloria’s Place of Hope, which helps children living with CHD. Her organisation aimed to help those who could not find the medical care they required in their own country.

I was little over a year old when I had my first operation at Deborah’s Heart and Lung Centre in New Jersey. Of course, I remember none of it. It was a fairly small operation (yes, no heart surgery is small but compared with others), and a shunt was placed before the PDA closed so blood could flow more easily. At one year old, I was too small for them to do anything further but that surgery would extend my life until I was old enough for the next one. Around the time I was two, the real operation was set to be done. I was flown back to Gloria’s Place of Hope in the States, where I underwent my second and largest open heart surgery. The doctors and surgeons would perform a total repair on my tiny two year old heart. It was perhaps the riskiest but also the one that was the most important. Clearly, it was successful or I would not be here writing this. Unfortunately, I also do not have memories of this surgery or the amazing medical team but their efforts live on in the work they have done to save me. In 2001, I underwent my third heart surgery, where the pulmonary valve had to be replaced. I have vague and faint memories of my time in America and by this time knew full well I had a heart condition, but I was still perhaps too young to fully understand what it meant. At the time, I was just a small happy child who could live his life.

My most recent and fourth open heart surgery was done here in Australia in 2010, in Sydney’s very own Westmead. I had outgrown my pulmonary valve, since even though the rest of my heart grew, the artificial one would not, so it had to be replaced. A repair was also done on my mitral valve, which had shown signs of leaking ever since birth. After this surgery, I was well and truly finally healed, after almost fourteen years of living with a heart condition. I will always live with the effects of a heart condition. I was never able to run as far as other people, or lift as heavy weights, or be as strong. But we take what we can and I like to point out that I'm pretty fast over short distances and my friends have been known to fear the speed of my sprint - well, for at least the first 50 meters - after which I generally drop dead from exhaustion!

The people I’ve met have always been intrigued about my condition. I have never met anyone who saw it as a weakness, or something that made me less. They saw it as something that was a unique part of me and because of that, I was proud of it too. I’m thankful to all those people who have helped save me, and let me be able to live the life I can. One day I want to give back to the world, to help other people as they have done to me. And slowly, bit by bit, I think I’ll be able to do that. After all, miracles do happen.

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chinese, hope, law, miracle, operation, study, surgery, uni

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 https://www.facebook.com/Katiezsings/  

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Kristie's Story

ASD WHY ME?

Written by Kristie, 5 October 2015  |  Atrial Septal Defect (ASD) 

Hi my name is Kristie, I am 21 and was born with a heart condition called Arterial Septrum Disorder (ASD). I always ask myself "What would my life be like if I never had this condition"? Well, I don't know but I'm sure it would be different. Where would I be? Who would I be? These questions have always gone through my head but it's an answer I'll never find. When I was born my parents were told that I had a heart murmur and that it should go away with age but it didn't and when I was 2, I had my first open heart surgery. Since then I have had leaky valves,  cardiologist appointments every 2 years and would get breathless constantly which I always thought might have been because of asthma. About five or six months ago, the breathlessness got to the point where I struggled to walk up stairs at train stations and sometimes even to the mailbox so I went to my local GP and he sent me for an ECG. It showed abnormalities which he thought were because of my leaky valves so he sent me to see a cardiologist. When I saw the cardiologist he sent me for an ECG (to put in my medical records) and a ECHO,  which showed that one of the valves weren't opening and closing properly as well as it should be so when I had my appointment with the cardiologist he told me I would need another operation. At first I was told I would need three valve replacements but he sent me for another procedure (Transophageo echocardiogram TOE for short) where I had to be sedated and have a camera put down my throat to get better pictures of my heart. It showed that there was a membrane partially blocking the aortic valve (the main valve of the heart) so I was sent to visit the surgeon. He told me that it was a possibility that I would need at least one of the valves repaired and the membrane removed but he wouldn't know until he opened me up and had a look. I was told it would be six to eight weeks before I would be booked in for the operation but about a week later I received a letter in the mail from the hospital stating that the operation would be on the 10th of August this year. I had been given an appointment at the pre-admission clinic on the 31st of July which would take about four to five hours. Finally, the day of my operation came.  I was in the operating room for only an hour and half and when I woke up I had my family and best friend there visiting me. When the surgeon came around he told me that he only needed to remove the membrane and clean it all up. I was in CICU for two days before being transferred to the ward and was in hospital for four days. Now it has been almost two months since my operation and I have had appointments with the surgeon and cardiologist. Both have said that everything is looking well and that I'm looking heaps better. The surgeon also said it will take longer for everything to heal because of the scar tissue that was already there and I might need another operation in another 10 to 15 years depending on how everything goes.

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Hudson's Story

The things we see in life

Written by Hudson, 2 October 2015  | 

Have you ever heard news that could change your life? If you have you know what I'm talking about, you know the experience where all these thoughts suddenly rush through your head, and how that one piece of information can affect your future. Well, in 2010 I was told that my heart had a little problem. Apparently I had two main veins that crossed over in my heart. Now, a year earlier I had a party and during that party I had a toothache. When I went to get the tooth taken out the dentist told me that my oxygen levels were low. so we went and had it looked at, the doctor told me that I needed an operation on my heart, open heart surgery. I know this is nothing special, you know with all these amazing survival stories I've read, but I found it scary because I was only 6 or 7. So for the next month or so I was having tests done which wasn't the best experience for me but still. Then the day came for me to have my operation, and I was so scared. When they lay me down on the operation table and put that mask on me it freaked me out, but that feeling soon disappeared after the laughing gas hit me. When I woke up I was pretty drowsy. My dad felt really sorry for me so he went out and bought me a Nintendo DS (it was that little thing that started my passion for video games) I didn't even react I was so drowsy! I can't remember much after that, one of the only things I can remember are the awful bacon and ice-cream for breakfast. So yeah, I don't really have much of an exciting story, but, I thought you guys would like to know. Over all, I don't really have a moral to this story. I guess I should just say that... "even if it changes all, don't hold back you cannot fall" - Hudson, the gamer 2015

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Isaac's Story

From HSC to Boston for heart surgery

Written by Isaac, 23 September 2015  |  Ebstein’s Anomoly 

From a very young age, I knew that I was not physically as strong as the other kids in my class. I didn’t know why or how but I knew that I could not run as fast or jump as high as they could. Later I discovered that this was because I had a congenital heart condition called Ebstein’s Anomaly. To be honest, as a young kid I didn’t really know what it involved other than the fact that it was bad and rare. It has restricted me, no doubt, but I am glad I’ve been able to keep pace with my friends in the classroom, join in supporting the sports I love and finish 13 years of school.

Right now, I’m facing off against the looming and hectic HSC exam schedule but while my friends will take their journeys from there to schoolies, gap years and uni I have another big challenge ahead.

The fact is, it’s getting harder to do the things I used to do. I have never been one to be racing around the rugby field or sprinting across the cricket pitch but I used to be able to do more. And so, later this year I am heading overseas for some very specialised heart surgery not available in Australia.

This is a huge thing but just as my school mates are looking forward to their post school adventures, I am looking forward very much to the opportunity to travel to Boston after my final exams to get a heart operation.

This trip is a glimmer of hope at getting about more easily and doing more of the things I love. Travelling overseas for surgery is no picnic. As well as being in a strange country, with a medical team you don’t know, the surgery is very expensive but unlike some other heart conditions, treatment of Ebstein’s Anomaly is restricted to only a few sites around the world. The Mayo Clinic, Minnesota, and the Children’s Hospital, Boston both offer the ‘cone procedure’, which is what the cardiologists say I need.

This is ‘the most extensive valve reconstruction ever performed on any human valve' (according to Dr Cetta, Mayo Clinic). The operation aims to repair the tricuspid valve by detaching and re-positioning the leaflets, suturing them into a ‘cone’ shape, so that the heart may function more like a ‘normal’ heart.

This journey that we take, as kids living with a heart problem, can seem daunting, but there are moments of excellence. Like my trip to Boston or when your mates rally around you. I was lucky to be part of a high school that really catered to my abilities and allowed me to be a part of the sports I love even when I wasn’t up to the physical side of things. Still, I could barely believe it when they dedicated a WHOLE DAY to raising money for my journey to Boston! This boost from my classmates is amazing. I am extremely grateful to all the people who are helping me and supporting me in lots of ways, especially my high school. So for me it’s HSC, open heart surgery and then, if I’m lucky, uni. You can read more about my journey and help support me in my fundraising: https://www.youcaring.com/isaac-west-428776… Thank you.

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Mariah's Story

CHD: From a patient to a (future) medical geneticist

Written by Mariah, 12 September 2015  |  Truncus Arteriosus 

It's kinda funny how I was born with a 'broken heart' the day after Valentine's Day, isn't it? My Mum had gone into labour on the 14th of February 1995, but I wasn't born until 6 am on the 15th. I was about a month and a half premature.

Having my birthday the day after Valentine's Day has always made me bitter in all honesty, but I got over that by the time I was 16. Though, the road is still not always easy. I have had struggles with anxiety and depression since I was about 15.

The anxiety's still kicking around in all honesty but I've got more of a handle on it now. I also have asthma that's kind of linked in with my CHD.

I was born  in Melbourne with Truncus Arteriosus. My condition wasn't found pre-natal, however I was quickly stabilised in post-natal care.

I've had three open-heart surgeries since 1995, with the last one in 2004. I'm not entirely sure if I'm going to need surgery in the near future, because I've been having trouble trying to get a new cardiologist since I've moved from Brisbane back to Melbourne.

My experiences in and around the medical systems in Victoria and Queensland have had a huge impact on my desire to go into medical research.

I'm currently studying a Bachelor of Science in Genetics and Psychology at Monash University. I am hoping to one day become a researcher in stem cell technology. I'm also very interested in finding the mutations in the genome of patients with CHD.

I love science and I really hope to one day have that passion for science enable me to help people like myself through medical science and technology.

Now that I have such a sure path for myself and my life the bitterness of being born with a 'broken heart', on the day after Valentine's Day, has definitely worn off and I'm definitely not as pessimistic about the future.

I am definitely thankful for the support from my family and friends throughout my life.

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Quincy's Story

I can still remember the darkness taking me

Written by Quincy, 8 September 2015  |  Long QT Syndrome (LQTS 1) 

I was born with LQTS type 1.

As a baby, I was always sick. I slept way too much. My temperature was always running dangerously high. The doctors thought they might lose me, but none would help because they were on strike. My dad went to city hall (I'm Canadian) and fought until they found someone who would see me. This doctor did a few quick tests and dismissed the issue, saying I had an innocent murmur and would grow out of it as I got older. And sure enough, every year my family doctor would tell me she could hear it less and less.

When I was 14, I passed out for the first time. I would grow faint, see black dots forming, and the darkness would grow until I went under. Usually it happened during exercise; the beep test in grade nine gym class, my earliest days training martial arts, once mid-air while snowboarding, a few times just sitting at my desk. It took a year and a half of running the same tests over and over again, blood tests, ECGs, EKGs, portable heart monitors for days or even weeks at a time, etc.

Once they tested for issues with my lungs, which involved being in an airtight chamber and only able to breathe through a tube. The doctor would block the air going through the tube while I struggled to breathe, and just as my lungs were screaming for air a slow trickle would come through and finally she would open the tube. That was the scariest one.

Finally I was sent to Sick Kids, where I did all the same tests for a third time as well as one new one — a stress test, which had me hooked up to various monitors as I walked, climbed, and ran on a treadmill. After a terrifying and traumatizing year and a half of testing, on the day I had resolved to give up if they had no answer for me, I was finally diagnosed with my heart condition.

That year and a half changed my life. None of my friends knew what was going on with me, only a few teachers did. My brother thought I was making it up, and even my parents weren’t always convinced there was something actually wrong with me. But I can still remember the darkness taking me… sometimes it was welcomed, a relief almost, respite from the faintness I felt before the darkness came; most of the time, I feared it. So many times I would think, This is it, as my vision went black and my eyes grew heavy, This is how it ends. This time, I don’t wake up. But somehow I always did.

The doctors told me I was lucky. That most of the time, this condition is found in the autopsy around the age of 15. I was diagnosed just before my 16th birthday. 

At times, I still have difficulties feeling lucky to have gone through what I did at such a young age. 

This tattoo depicts a heart beat with the elongated QT interval seen in those with LQTS 1. I picked an image online that resembled my own LQTS heartbeat (mine was too close together for a good image, as my heart rate would go up to nearly 210bpm during these episodes).

I got it as a reminder to myself that I am a survivor. I already beat the odds. I am lucky to be here.

It reminds me that every day is a gift; that the last five years have been a gift, and every day I continue to live with this heart in my chest is something to be grateful for (whether it feels like it at the time or not).

Meghan's Story

I wouldn’t change a thing

Written by Meghan, 8 September 2015  |  Tetralogy of Fallot (TOF) 

Hi my name is Meghan! I am a heart adult living with a congenital heart defect known as Tetralogy of Fallot. Born in 1989 at Flinders Medical Centre, it was clear something was wrong straight after my birth. After routine checks a loud heart murmur was discovered. I was then sent to Dr Brodie Knight And Dr Malcolm Richardson at the Women’s And Children’s Hospitals Cardiac Clinic. After several x-rays, echoes, and blood tests I was diagnosed. At three months old I had my first surgery to put a shunt in, this would buy me some time until I was strong enough to have open heart surgery. Finally at 12 months old I had my full Tetralogy of Fallot repair in Melbourne at The Royal Children’s Hospital. I had two more balloon catheters as I grew to open up my narrowed pulmonary arteries, one at 11 years of age and another at 15.

Growing up I always felt fairly normal, besides having the catheter and a big scar down my chest I didn’t feel like a heart kid. I had yearly appointments with my doctors at the Women’s and Children’s but I was never really told what exactly was wrong with my heart and was never treated differently by my peers at school or at home. When I turned 18 years old I started seeing Dr Patrick Disney, an adult cardiologist who specialises in congenital heart defects. Over the next few years I started to become more symptomatic and Dr Disney started discussing the replacement of my pulmonary valve. I had started getting short of breath and my exercise tolerance was low, I became very tired and lethargic and could barely walk up a flight of stairs without needing to sit down to catch my breath.  After several tests a year later I was put on a waiting list for my valve replacement, however only a few weeks later I found out a lovely surprise - I was pregnant! My partner and I were thrilled but scared as to what this might mean for my health. After speaking to my cardiologist and my heart surgeon they were happy for me to go ahead with close monitoring. We were ecstatic!!

Nine fairly easy months cruised on by and I gave birth by an elective caesarian delivery to a healthy baby boy at 38 weeks. Back on the waiting list I went and eight months later I was in Melbourne at Monash Medical Centre meeting Dr Andrew Cochrane who operated on me for nine hours and replaced my pulmonary valve with a tissue bovine valve. Everything went off without a hitch and I was out of hospital in five days. The recovery was a lot harder than I expected but my beautiful supportive family pulled me through it and within six weeks I was almost back to my old self. Over the next year I got stronger everyday, my heart function was better than ever and I felt a million bucks, so much so, that we decided to add to our family and have another baby!

The pregnancy went really well and at just 18 months after my open heart surgery I delivered a healthy baby girl naturally at 40 weeks. 

Here I am today, married, three years post open heart surgery with two babies younger than four!

I have just started teaching swimming lessons and am so excited to start this new chapter in my life. I feel blessed every single day.

I didn't choose life with congenital heart disease, it chose me. It makes me appreciate every moment, hold on to every memory and live everyday like it's the last. It has taught me compassion because I know what it's like to suffer, it has taught me patience when life has literally been one hour at a time, it has led me to meet the most amazing people and taught me to not bat an eyelid at people who aren't worth my precious time. This is my normal, this is me and I wouldn't change a thing.

Lleyton's Story

“What if?”

Written by Lleyton, 8 September 2015  |  Atrial Septal Defect (ASD) 

What would my life be like if I never had this condition? Well, I don't know but I'm sure it would be different. Where would I be? Who would I be? These questions have always gone through my head but it's an answer I'll never find.

Having four surgeries by the age of 16 is pretty big but, for me, it's just how life is. I really started learning about my condition when I was around 14 years old. Understanding the concept and what I had to go though was surprising for me. What really hit me though was when the doctor said: "You’re not allowed to play contact sport." I guess that's why I played netball growing up.

I've always wondered what it would be like to play footy, to grow up like any other Australian boys. Would I be a different kid? Where would I end up? I got a glimpse at this last year when I had a chance to play footy and it's a memory that will last a lifetime. Having 24 boys sprinting up to you saying: “you did it” and supporting you, well, it warms me up just remembering the moment and always puts a smile on my face.

I look around my room and see photos of the times I want to remember. If I didn't have a heart condition would these photos be different? I look around at all these faces that have lit up my world over the years. I consider myself a "floater" a boy that doesn't have a group and is able to talk to everyone. I won't lie I love it! It's great being able to talk to everyone and have jokes. What sucks and what I've realised tough is when I'm with some friends or at a party I always lie in the middle and wonder to myself "what if". To me those two words have impact.

I have many situations where I ask that question and if there's anything I could have, or should have done that may have made life different.

But in reality, having this condition has made me who I am. I don't think I would be that ‘kind hearted boy’ making sure everyone was okay if I never had this condition. So, to me it's made me better and a lot stronger. Sometimes, when bad things have come up I would go into my room and think: “wow it's because of my heart” - I don't know why but I just do. But while I might sometimes feel like I’m ‘weaker’ than others I know that’s not really the case because in all honesty I'm most likely stronger than my peers. Heart kids don’t have the option of being weak, we are strong and brave. The words: “give up" just aren't in our system! We love to fight and we’re proud of who we are. So, while I don’t have all the answers to the “what ifs” and “whys” I do know that the life I have is amazing and I wouldn't change it for the world. To those reading this who may still be quite nervous about their condition - go out and live!

No one ever knows what will happen in life. You may walk out that door and it could be the start of a new chapter! I know I've had a couple of those encounters and they just make you better. Stay true to yourself and be honest. Because I feel if you are honest to yourself life will give great things to you.

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Strive not to be a success, but rather to be of value. Albert Einstein