Newry man with congenital heart disease offering help and hope for others

At just three months old, Karl Murray’s parents were given the devastating diagnosis that their first child was born with a congenital heart condition and would need open heart surgery to repair his heart and ensure his survival.

Congenital heart disease affects thousands of families across Northern Ireland. It is a heart condition or defect that develops in the womb before a baby is born.

Often medical professionals don’t understand why the baby’s heart hasn’t developed properly, but the British Heart Foundation (BHF) is funding research to find crucial breakthroughs to improve the way we diagnose and treat babies, children and adults born with congenital heart disease.

Karl’s early surgery was a success, however it was simply a band aid over a serious condition, which has limited the activities he can do in his life.

But now at 28 years old, Karl, despite waiting on further surgery to replace a damaged heart valve, is using his voice to help others going through similar life-long experiences, as part of the British Heart Foundation’s Patient & Public Research Strategy Advisory Group.

He is happily married, now lives in Lisburn and has managed to secure a professional career in the education industry.

But Karl is only too aware of the stress, anxiety and fear that comes with congenital heart disease.

He was born with tetralogy of Fallot, which affects how your heart works and blood flows through it, and now wants to share his story to show you can enjoy a fulfilling life – despite having congenital heart disease.

Karl says: “When I was two or three months old, my mum first thought something may be wrong as I wasn’t eating properly and kept falling asleep every time they tried to feed me. My granny, who was a nurse at the Royal Children’s Hospital, suggested they take me into hospital, where I was tested and diagnosed with congenital heart disease. I was in and out of hospital over the next 3 months.”

At just six months old, Karl had seven hours of open-heart surgery at Belfast’s Royal Victoria Hospital, repairing the hole between the two bottom chambers of the heart and widening the pulmonary valve. The operation was successful, however Karl’s parents were told it was likely he would need further surgery and medication in future years.

“Since I was about 13 years old or 14 years old, the doctors have been telling me surgery is going to come the next year,” admits Karl.

“However I’ve had regular check ups with my cardiologist and as I’m doing well they don’t want to perform the surgery until I absolutely need it.

“It is difficult to have the thought of surgery hanging over me but I'm still healthy, which is the main thing.”

When Karl was growing up he experienced symptoms such as chest pain, palpitations and tiredness but medication has since helped with that. It did however mean he couldn’t pursue a sport that was in the family, football.

Karl concedes: “I come from a very big sports background. My grandfather and my dad played football competitively, but I had to accept from a young age, I couldn’t play contact sports or do any form of intense exercise due to the risk of further damage to my heart.

“My childhood was filled with hospital visits, I remember spending one Christmas in hospital when I was around five years old.

“However my parents worked very hard to give me a normal childhood and while sports wasn’t an option, I picked up the guitar instead. My interest in music eventually led to an interest in technology and my professional career.”

When Karl was around 15 years old, he was told that the damage to his heart was getting to the point that he would need surgery but medical staff couldn’t confirm a date for the operation. Unsurprisingly this created anxiety.

He adds: “I’m lucky enough to have very supportive parents who I can openly talk to and they helped me through the anxieties of living through my teenage years with a heart condition and how to overcome certain challenges.

“However at 16, I’d still never really met any other person with congenital heart disease and that can be very isolating. It’s not always easy to speak to people about what you're going through. When you’re a teenager, you may think that adults don’t understand or that they don’t listen to what you say. That’s what a normal teenager goes through. Put yourself in the shoes of a teenager who grew up with cardiovascular disease, and it’s a hundred times harder.”

At this stage, Karl was put in touch with the patient network, ‘meet@teenheart’, developed and operated by the British Heart Foundation (BHF), which connected him with young people from across the UK who were living with congenital heart disease.

BHF reached out to Karl to invite him on an adventure weekend away for teenagers from across the UK at an activity centre in England where he made 40 new ‘friends’, young people with similar conditions, which Karl says, “changed his life”.

“I met teens who enjoyed the same music as me and enjoyed the same movies and hobbies. I’ll never forget crying with laughter the whole weekend. And in the back of our minds, we knew what everyone had been through. We focused on having fun first before we talked about the doctors' appointments, the scars we had picked up, and what it was like to meet those who understood what we had gone through. “

Karl continued: “The BHF gave me the opportunity to meet others like myself during a point in my life when it was exactly what I needed. I learned from those individuals that it was never about being defined by your condition, and it gave me the building blocks to become who I am today.”

Karl has regular check-ups with his consultant cardiologist and while he feels fortunate to be healthy, he is well aware that at any of these check-ups he could be told that further heart surgery is necessary.

“For years, I think I was kind of living on the idea of always getting surgery the next year. Then I think it was when I got engaged and bought a house it made me start to question whether I should be constantly waiting for it as it was affecting my plans for the future , around my wedding and having kids.

“It is always in the back of my mind, or I should say it always was in the back of my mind. But I have now taken the attitude that I’m going to get on with my life and not let my condition put any future plans on hold.”

Throughout his teenage years and into his twenties, Karl stayed connected with the BHF and became involved in its patient and public involvement network, ‘Heart Voices’, giving him the confidence to overcome challenges and develop his own patient voice.

He is now an important member of the BHF’s Patient & Public Research Strategy Advisory Group.

Karl said: “After the BHF events I attended as a teenager, I always wanted to give back to the charity. Unfortunately, I can’t do sports to raise money yet, as I’m still awaiting valve replacement surgery, but I thought that I could use the skills I have picked up in my professional career to assist.

“I have been able to give back since I joined the Patient & Public Research Strategy Advisory Group in 2023. I’ve had the opportunity to share my experiences as the youngest member of the group and learn from others about what they have overcome.

“From discussing the impact of CVD on the mental health of children, teenagers, and adults to seeing more research opportunities across Scotland, Wales, and Northern Ireland, we have an opportunity to make our voices heard. It’s incredibly rewarding to see that its had an impact in the short time the group has been formed.”

Karl added: “I know how much research into heart and circulatory conditions has helped develop better treatments and care for people living with congenital heart conditions, so I want to give back by helping where I can.

“I’m using my voice and my experience to encourage others to share their story and for people to understand how they can help support the thousands of families who are living through these challenges every day.”

Head of British Heart Foundation NI, Fearghal McKinney, said: “Heart defects are diagnosed in at least 1 in 150 births - that's an average of 13 babies each month in Northern Ireland – with even more diagnoses later in life.

“It’s extraordinary what Karl and his family have been through since he was a baby and seeing his resilience and continued passion to support the British Heart Foundation is just amazing.

“Before the BHF existed, the majority of babies diagnosed with a severe heart defect in the UK did not survive to their first birthday. Today, thanks to research, more than eight out of ten survive to adulthood.”

Fearghal added: “During the festive period we usually gift material things. This year we’re asking people to give the gift of more life for those with heart and circulatory conditions by helping to fund our lifesaving research. This will help keep families like Karl’s together for many Christmases to come.”

To give a gift that keeps on living, donate to the British Heart Foundation by visiting bhf.org.uk/Christmas