Life

West Belfast man Ryan Leitch on living with congenital heart disease

As a tiny three-year old, Ryan Leitch lay in hospital fighting for life due to an undetected congenital heart condition. Thirty years on and grateful for the advances in heart research that have helped him lead a full life, he shares his story with Jenny Lee

Cherishing life with a walk up Divis Mountain is Belfast man Ryan Leitch, along with his four-legged friend Ziggy
Cherishing life with a walk up Divis Mountain is Belfast man Ryan Leitch, along with his four-legged friend Ziggy Cherishing life with a walk up Divis Mountain is Belfast man Ryan Leitch, along with his four-legged friend Ziggy

"I REMEMBER taking the bandage of my chest when I was a young and seeing the big line of 60 stitches. That horrified me as a kid. I don't want scrawled on again with a knife."

These are the words of west Belfast man Ryan Leitch, who at the age of three almost died after suffering multiple cardiac arrests due to a form of congenital heart disease called Fallot’s Tetralogy.

Telling his story, Ryan said: "My mum knew something wasn’t quite right with me from a young age. She was concerned about my blue lips and fingers, my listlessness and lack of appetite. Our family GP put my symptoms down to chest infections, but my mum had already raised seven children and knew deep down something was wrong."

One evening just before Christmas Ryan dropped to the floor and stopped breathing.

"Luckily my mum had watched somebody perform resuscitation on a child on TV a few days earlier and, God love her, she desperately did everything she could remember," Ryan says.

His older brother Peter sprinted for help to Woodbourne police station and an armoured Land Rover rushed him to the Royal Victoria Hospital.

Ryan's parents were told life-saving open surgery was vital for his survival but they had to balance the urgency with his body becoming strong enough to endure it.

In the months that followed, he continued to suffer a number of febrile convulsions and fits, before at the age of four being deemed strong enough to travel to the Royal Brompton Hospital in London for the specialist treatment he desperately needed.

"Living with a congenital heart disease has many implications that many people just aren’t aware of. I remember the upheaval it caused in the house and the problem of meeting the cost of travel and accommodation, and providing food and care for my brothers and sister who had to stay at home," Ryan says.

He recalls his mum telling him he "was a different person" straight after the operation in terms of his colour and physical ability.

Growing up, the effect of Ryan's condition wasn’t just physical.

"Although I grew stronger, I was paler and thinner than other children and I tired more easily. I couldn’t join in the everyday physicality of kids at play. And this marked me out as different. Not just to others, but to myself."

Two further coronary angioplasty operations followed, through keyhole surgery, at the age of 10 and 17 to widen an artery.

"I often wondered how long I was going to be around for. My teenage years were a minefield. I worried what girls would think of my scars and hated when I got sympathy instead of attraction," he recalls.

Now, at the age of 37, Ryan lives a full and happy life and with the support of Northern Ireland Chest Heart and Stroke (NICHS) is able to accept his lifelong condition more readily.

"I was quite unwell in my early-to-mid 20s and frustratingly lost one or two jobs when I had to take time off sick due to infection and massive palpitations. But today I am blessed to have an employer who knows my situation and supports me.

“Alongside the tough times I have also won sports days, climbed mountains and even participated in weightlifting competitions. I do enjoy life more than the average person because of having been that close to losing it. In the winter I love climbing Divis at night – it's just stunning. I try not to let anything stop me."

Next year Ryan plans to marry his partner Elley but he has made the tough decision not to have any children of his own.

"There is a tiny chance my condition could be hereditary and I wouldn't want my child to go through what I went through and I also worried I wouldn't be around for them because I'm prone to infections, colds and flus and you can't always avoid them."

Sadly Ryan's mum, Sophie, won't be at his wedding – she died last year of a stroke following a battle with lung cancer.

"Mum was brilliant, funny, strong and caring and never gave up on me. As she was about to fall asleep, I made sure to thank her for everything. My mum saved my life when I was three. Now I want to help others."

He hopes that by sharing his own story he can help raise awareness of NICHS's Christmas Care Fund which helps children and adults living with the same fears and hopes he has.

“The amazing procedures that saved my life were made possible through funded studies and research. I lost my mother to a stroke but many survive and they find themselves supported by the care services NICHS provides – people like my dad Roy who struggles every day with the effects of COPD [[chronic obstructive pulmonary disease]."

More than 200 babies are born each year with congenital heart disease, with 4,300 people suffering a heart attack in Northern Ireland every year. This year, NICHS will invested £3 million to help the 4,000 people in Northern Ireland affected by respiratory, heart and stroke illnesses through life-changing and lifesaving research projects and care services.

As Ryan faces the prospect of further surgery in the future, he is hopeful that research into keyhole valve replacement surgery will mean not having to undergo open heart surgery again.

"As a child I couldn't even lie on the floor to do my homework as I could feel the scars. I don't want scrawled on again with a knife. I'm hoping to stay healthy before keyhole valve replacement becomes commonplace. It shouldn't take that long. It's such a hope for me," he says.

:: To donate to Northern Ireland Chest Heart and Stroke's Christmas Care Fund visit www.nichs.org.uk