Scarred for life

 Bernhard Reed

Bernie was born as a blue baby with Tetralogy of Fallot.

Until he was nine years old he needed to be ferried around in a pushchair. Before he was 13 years old he had had three open heart surgeries. As a child he spent a lot of time at home, couldn’t go out to play with other children and was unable to take part in any sports.

“When I was in my teens and mid-twenties I was very aware of my scars as people did tend to stare.”

Claire Choong

Claire has Transposition of the Great Arteries, Ventricular Septal Defect and Pulmonary Stenosis. She had surgery when she was three years old and when she was 30 and has a pacemaker.

As an adult, she is less bothered about what people think about her scars, but growing up wondered what it was like to be normal.

“I still suffer from anxiety and a lack of self-confidence which are rooted in my childhood of being and feeling ‘different’ and unable to do things that other children could do. I think I still want to be ‘normal’, even though I know there’s not really any such thing.”

Ella Stanley

Ella has Transposition of the Great Arteries. Her first surgery was at five days old, her second at age three.

“Just before my 21st birthday I was told I might need a triple coronary heart bypass, which meant that they would cut into my legs and arms to harvest veins, but all I wanted to do was plan my 21st birthday party.

It has taken me nearly two years to come to terms with my new scar and some days I have really struggled to get out of bed, let alone getting dressed and carry on with the day.”

Julie Scanes

Julie was diagnosed with a heart murmur at the age of 13 during a routine school examination. She did not undergo lifesaving surgery until she was 26 years old.

“My scar signifies the fighter in me and how precious life is. It gave me the opportunity to go on to become a Mum. After surgery I was able to have my wonderful son Robert. It was too risky before surgery due to very high blood pressure. I no longer live in fear and isolation.”

Keaton Stone

Keaton was born blue, with Transposition of the Great Arteries. He went straight into intensive care. His mother couldn’t even hold him. That day he was christened in the incubator as he wasn’t expected to last the night. He held on until life-saving surgery at 11 months old.

“The docs took me off games at school, just in case I had problems and physically I’ve had to slow down lately but that might be age! I’m proud of my scar and what it means and won’t let being a heart patient stop me living my dreams and life to the fullest. I realise not everyone with a heart condition is like this so I thank my lucky stars.”

Raksha Agheda

When she was growing up Raksha was defined as “the girl with the heart problem.” Her health is not as brilliant as it used to or could be but she does not let her heart condition define her.

“I was of the generation who were used to the possibility that we would not live out our full years and as a result many of my friends are no longer around. Yet I am thankful every day and make the best of each day. I have supportive family and friends and I hope other heart patients are encouraged to live life to the full.”

Richard Barnes

Richard was born in the 1960s and at 13 years old had his first open heart surgery.

“Sometimes I feel guilty at having survived when so many others didn’t.  When I was a teenager I was conscious of my scar, especially when swimming as it went blue in the cold. Recent surgery involved cutting through my old scar and replacing it with a new, neater one.

The mental scars are sometimes deeper than the physical ones. My fear is that something may go wrong and I will leave my wife and children on their own.”

Steven Bradley

Steven had his first surgery at 18 months old and more recently has had two mechanical valves fitted. His 5 year old son was also born with a congenital heart condition.

“This was tough to deal with as I felt quite guilty, that this was my fault! My son has had three operations already. We speak about our special hearts and our scars that are in the same place.  Life with a child and one that holds much uncertainty for both of us is difficult. Even though we both have limitations I hope that I am able to inspire my son.”

Vikki Irwin-Cox

Vikki was born with Atrioventricular Septal Defect but wasn’t diagnosed until two months later when she turned blue and stopped breathing. Surgery followed to repair a hole in her heart and rebuild a heart valve. She had a second surgery at 21 years old.

“Going through this operation as an adult was very different and only those who have gone through something like it can understand the physical and emotional toll it takes. I know that the journey with my scars may not be over and I could need further surgery in years to come. I can’t deny that this doesn’t terrify me.”

David Wilson

Before he was born, David was diagnosed with Unbalanced Atrioventricular Septal Defect and Coarctation of Aorta. He had his first operation at 12 days old. At two years old, David was in intensive care for 11 weeks and had three open heart surgeries during that time.

David has an artificial mitral valve. This might last for 10 years, but he will then need to have further replacements as he grows. The other valves in his heart are being closely monitored at the moment, as they may also need to be replaced or repaired as he gets older. He will require lifelong specialist care.

The future for David will be challenging, however as he grows into adulthood The Somerville Foundation will be there no matter how tough life becomes.

The Somerville Foundation is determined to fight for better services and through our research partnerships discover new, more effective treatments and medicines to help David, other young people and adults to live long happy and healthy lives.

Help to make the world a better place for congenital heart patients by supporting our research and services with a donation today.

– Published 29 /4/2018