The Story of my Heart
By Owen Simpson
As it is World Heart Day, I thought I’d share my experience of being born with a congenital heart defect and the life that followed!
I was born on November 23rd 1983 and from the outside looked like a happy and healthy baby, however I had actually been born with a congenital heart defect called Tetralogy of Fallot:
“Tetralogy of Fallot (teh-TRAL-uh-jee of fuh-LOW) is a rare condition caused by a combination of four heart defects that are present at birth (congenital).
These defects, which affect the structure of the heart, cause oxygen-poor blood to flow out of the heart and to the rest of the body. Infants and children with tetralogy of Fallot usually have blue-tinged skin because their blood doesn’t carry enough oxygen.”
My parents discovered I had the defect as I would regularly turn blue and have trouble breathing, which even in 1983, seemed a tad odd.
Big and strong enough to operate
When I was 3 years old it was decided that I was big and strong enough to operate and I had open heart surgery. I’ll be honest and tell you I can’t remember too much about it aside from my brother eating the chocolate people had brought in for me.
If you speak to my mum and dad though they can remember every minute. It turned their world upside down for months and, having 2 other children, it became a balancing act to give my brother and sister the love and attention they needed whilst caring for me. I sometimes think about everything they went through and how hard it must have been and 35 years later they still worry.
My mum never left my side during that time and slept in the hospital every evening (even though she had been told she could not) and still I’ve only been to 2 heart appointments without her – you try telling her not to come!
Anyway, after my recovery period I went on to have a very normal childhood and was always encouraged to play and be like everyone else but to perhaps take a breather if I felt tired. Probably explains my love of napping now.
The story of my heart does not end there though…
I led a normal life – played for a football team (badly), went to Uni (occasionally) and had the odd girlfriend (your guess is as good as mine how).
However, on March 31st 2008 one of my close friends died of Sudden Adult Death syndrome. He went to bed a happy and seemingly healthy man but had an undetected heart defect.
I do not like just describing how he died so you should know his name was Matthew Turpin and I’d known him since we went to secondary school. He was a professional Prince William look-a-like and was funny and caring. I miss him and think of him often and wish I could have spent more time with him.
His death started to make me think about my own heart again and I’d fallen out of the NHS system having not had a check-up in 10 years and couldn’t get many answers as to why.
At the time I was working at Edge Hill University and one day we had a CRY (Cardiac Risk in the Young) truck arrive on campus to do free heart health checks. I went along for my check and within 5 mins they told me that something was not right, and I needed to go to my doctors.
This 5 min scan with CRY started a journey that would include lots of tests and meetings at the hospital before I was told at the age of 28 that I would need my 2nd lot of open-heart surgery to be fitted with a new pulmonary valve.
Heart health is so important
On December 2nd 2011, I went to Manchester Royal Infirmary and had my surgery which was a complete success. It was not like the first time though – this time I can remember it and how daunting it was the, worries I had and how surreal it all seemed.
I was released to go home on the following Tuesday and began a long period of recovery which had some dark, painful days but these were eclipsed by days of optimism, happiness, and relief. I didn’t know how much I needed surgery at the time, but it changed my life – I felt so much healthier and full of life (unlike the cow who kindly donated their valve!)
I now have a lifetime of check-ups to look forward to and I know I’ll need surgery in the future but, unlike Matt, I know that I can prepare and that really is something to be thankful for.
It’s a long way of getting to it, but heart health is so important and if you ever feel like there is something you want to get checked out then please do. The tests really are quick and painless, and you might not know how needed it is. Speak to your GP for advice, or there are charities such as CRY who are there to help.