I think I’ve written a similar post like this a couple of years ago, however as it is Congenital Heart Defects Awareness week, I thought I would once again let you into huge part of my life that has shaped the person I am today.
My parents didn’t know that anything was wrong with me until the day I was born (although my mum’s body had produced a lot more water in her pregnancy in order to protect me whilst I grew. It’s amazing how nature knew there was a problem and yet no one else did). I was soon diagnosed with a condition called Fallot’s Tetralogy. This is where there are four defects found with the heart:
- Pulmonary Stenosis (A narrowing of the Pulmonary Valve).
- Ventricular Septal Defect (A hole in the heart).
- Right Ventricular Hypertrophy (The left side of my heart over compensated and meant the muscle thicker than it should be).
- Over-riding Aorta (The Aorta lies over the hole and allows some deoxygenated blood to be taken around the body).
I really don’t want to get too scientific, but if you want to, you can read up further on the condition here.
Although I was born with the condition, I was too small to operate on and so I had one operation around the age of one to put me on until I could have the full open heart surgery at two years old. I am so glad that I was very young when I had the operation as I barely remember any of it. However it pains me to think what my parents were going through, I can’t imagine what it must feel like to see your child hooked up to numerous monitors. They really are the bravest people I know.
Luckily everything went well during my operation. I made a fast recovery in hospital and when it was time to go home, I was watching Teletubbies and didn’t want to leave!
I don’t really have that many memories of being in hospital. I mean I was two years old so it is a very long time ago! Though there are three snapshots that have stuck with me. One was when my Grandad came to visit. I had my operation in December and so there was a Christmas tree on the ward. He got me out of my bed and walked me over to it. I know it doesn’t seem like that much of a big deal, but it is the small moments like this that are the most precious, especially when it was shared with my Grandad. He is such a special person in my life who I have the utmost respect for, and I know this memory will stick with him too.
Something else I remember is when I went for a bath we found a toy plane on the side. I think it belonged to another child there on the ward, but I remember playing with it.
The last thing I remember is more of a scent than a memory. There was a dad and his daughter on the ward next to me and she had apple scented hairspray. I think he gave my mum a bottle for me or told her where to purchase it from because I am sure that when I left the hospital I still had this hairspray with me. I just know that it smelt amazing.
Having the operation has saved my life. If I hadn’t have had it, I probably wouldn’t have made it past my tenth birthday, and if I had done, I could be in a wheel chair right now – which is so terrifying to think about. It has meant that I can lead a completely normal life. I’ve taken dance classes, achieved my Black-Belt in Taekwondo, been in numerous plays. Even had to do cross country at Highschool… as rubbish as it is running around a field in the freezing cold, I wouldn’t have wanted it any other way.
I still have trips to the hospital for check ups and echocardiograms (kind of like an ultrasound on my heart). I’ve even been told that I may have to have another operation in years to come – though my Grandad is adamant that this wont happen. But if it wasn’t for the scars on my body, it would almost be impossible to tell that I have a Congenital Heart Defect.
I am super grateful to all of my doctors and surgeons who have taken care of me throughout the whole of my life and my parents for being the most patient, understanding, loving people on this planet. They have been with me through thick and thin, and if it wasn’t for them I have no idea who I would be right now. I owe them everything.
If you or your child are going through the motions of having open heart surgery, please know that it can and does get better. I know everyone’s conditions are different and in my case I thank God every night for how lucky I have been. You have to stay strong and positive and realise you are not alone and things will pick up.
I’m no expert on the disease, but I have been through it, so if you want to drop me an email and talk to me about my experiences or what you’re going through then please don’t hesitate. It would be great to hear from you!
❤️ ❤️ ❤️