Scarred FOR Life

Scarred FOR Life was an exciting art project – a special photo exhibition of adults born with Congenital Heart Disease (CHD) baring their scars in celebration of life.

The project was run in Scotland by three CHD volunteers on behalf of Somerville Heart Foundation – Liza Morton, who was our Campaign Manager in Scotland, Jenny Kumar and Caroline Wilson. The photo exhibition was held in the Central Hall of Glasgow’s prestigious Kelvingrove Art Gallery & Museum from 12 February 2015 until 15 March 2015. For the month of May 2015, the exhibition moved to the Golden Jubilee National Hospital, Clydebank and in June 2015 the exhibition moved to the Forth Valley Royal Hospital, Larbert, and in October it was on display at our annual conference in Bristol and at the Scottish Parliament.

Below are the stories of those featured at the exhibition in Scotland in 2015.

They are Scott Burrell, Liza Morton, Caroline Wilson, Heather McDougall, Maggie Ross, Roderick Skinner, David Magennis, Karen Maclachlan. Sadly David Magennis and Heather McDougall have passed away since the exhibition. Our thoughts are with their families.

Watch the launch video on YouTube
Watch the makings of the first Scarred FOR life exhibition
Read the Scarred FOR Life 10 year anniversary article in UPBEAT Spring ’26

Scott Liza Caroline Maggie Roderick Heather Karen

Scott Burrell (36) is a Development Scientist. He had Pulmonary Stenosis corrected when he was three years old and an artificial pulmonary valve fitted September 2014.

Pulmonary Stenosis is a heart valve disorder in which outflow of blood from the right ventricle of the heart (the lower chamber) is obstructed, which reduces flow of blood to the lungs.

Scott’s story

I’ve had my scar as long as I can remember since surgery aged three.

Growing up it was good for impressing other kids and grossing out girls but I never really linked it to any memories of surgery, as I was too young to remember anything.

Over the years I sort of forgot about it, as the only reminder I had of having CHD was yearly check-ups all of which passed without the need for further treatment.

That all changed in May 2014 when it was decided I needed a valve replacement aged 36. Thankfully everything went to plan and I now have a new, more prominent scar on top of my old one. I know I’ll probably have to get through at least one operation if not more in the future, my scar reminds me of that. Though it also reminds me that I had the strength to get through it twice before and I can do it again when the time comes.

Plus, it’s still useful to gross out girls.

Dr Liza Morton (36) is a Psychologist. She was born with complete congenital heart block, depending on a cardiac pacemaker since birth and has a surgically closed atrial septal defect.

Heart block is a problem that occurs with the heart’s electrical system. This system controls the rate and rhythm of heartbeats. With each heartbeat, an electrical signal spreads across the heart from the upper to the lower chambers. As it travels, the signal causes the heart to
contract and pump blood. Heart block occurs if the electrical signal is slowed or disrupted as it moves through the heart.
Atrial septal defect (ASD) is a form of congenital heart defect that lets blood flow between the normally separated two upper chambers, the atria of the heart.

Liza’s story

My scars mean that I was born with a heart condition. They map my survival. At the top of my leg is where an external pacemaker once sustained my newborn heart. Tracks run from my breastbone to my back tracing where surgeons fitted early, fickle set-rate pacemakers beneath my ribs to my growing heart. The first at eleven days old, five by my seventh birthday. A neat vertical line marks where my breastbone was opened, aged twelve, to mend the hole in my heart. A messier site, beneath my left collarbone, hosts a pacemaker, one of several fitted since my late teens.

Left behind by countless intravenous interventions, white flecks litter my hands and wrists. Together, these scars mean that from an early age I had to find a way to tolerate pain, disappointment and fear without being consumed by it and to own my body while
others treated it. They remind me life can be unfair yet with compassion resolve can overcome. They map a path less travelled forcing me to find my own way.

My scars speak of a life gifted by medicine, the humanity of our NHS and the family and friends that have walked with me.

Caroline Wilson (39) is a Journalist in Glasgow. She was born with a coarctation (narrowing) of the aorta and a bicuspid aortic valve (an aortic value that has only two
leaflets instead of three).

The aorta is the main blood vessel that brings bloody to the body and the aortic valve regulates blood flow from the heart into the aorta.

Caroline’s story

My scar stretches upwards across my back, a hidden part of me. It is a reminder of the fragility of life and the resilience of the body.

My aorta was almost entirely blocked from birth and my body built its own network of blood vessels to help bypass that blockage and keep me alive. The problem wasn’t discovered until I was 31, when one GP refused to ignore my dangerously high blood pressure – she probably saved my life.

The first cardiologist I saw simply shook her head when I told her I had recently run a half marathon, apparently I could have died during it.

When I look at my scar and sometimes when I’m out running now, I give thanks to the NHS and for the extraordinary skill of the surgeon, Mr Jim Pollock.

Maggie Ross (43) is a Senior Outcome Development Worker in Glasgow. She was born with an ASD, AVSD, mild-moderate AV valve regurgitation and mild left ventricular outflow tract obstruction.

Atrial septal defect (ASD) is a form of a congenital heart defect that lets blood flow between the normally separated two upper chambers, the atria of the heart. AVSD is an atrioventricular septal defect that lets blood flow between the normally separated atria and the ventricles, the two lower chambers of the heart.

Atrioventricular (AV) valve regurgitation is a congenital condition where the valve does not close tightly, therefore blood that was pumped out leaks back in, preventing the heart from efficiently pumping blood to the rest of the body. This causes fatigue and shortness of breath.

With AVSD this obstructs the left ventricle, causing issues with blood getting efficiently pumped to the rest of the body.

Maggie’s story

I was born in 1971, my first open heart surgery (OHS) scar was born in 1980. The summer of that year I came to life. I could now run, play, dance, skip, hop and jump until my heart’s content. My scar to me as a child meant I had a newfound strength, power and freedom in this world. No longer a bystander.

My second OHS scar was born in 2009, shortly after my third child was born. As an adult this scar created a sense of gratitude for the change and hope for the future. My scars remind me that I’m a warrior and my heart is my secret weapon against the odds.

Don’t get me wrong, there was and are times when there is an inner turmoil of fear and anger when I look at my scar, but I remind myself “I am her, alive”. These scars are mine, a part of ME.

Roderick Skinner (72) is a former EU Civil Servant and has had a bypass and a replacement of aortic valve with a mechanical St Jude valve.

Roderick’s story

The night before my surgical procedure, I well remember studying my chest in a mirror and thinking ‘this is the last time I’ll look whole’. The next day I awoke with the long and deep incision, which had been necessary to remedy my various cardiac faults. As my recovery gathered pace, I became much more aware of it and took to wearing a tee shirt just about all the time so as to disguise its existence from others. But then I came to realise that I was actually hiding it from myself and that without the scar there would, in fact, be no me.

I love swimming, particularly in a warm sea. The tee shirt has long gone and I rejoice again in the water’s kiss directly on my skin. I also harbour the perhaps fanciful hope that among those on the beach there may be some awaiting heart surgery, or who know someone that is, and
they can say to themselves: ‘there’s an old boy who has come through that experience and look how much he’s enjoying himself’.

Yes, I’m scarred WITH and FOR life – and so thankful for it.

Heather McDougall (29) was a Research Scientist and had Shones Syndrome, which is a rare combination of four left-sided congenital cardiac anomalies. She sadly passed away while awaiting a heart transplant. Her family have given permission for us to continue sharing her story and photos.

Heather’s story

I count myself lucky that next year I will be turning 30 (however I would rather be 21 again)! When I was born I was a healthy baby. However, at six months old, I deteriorated and my mum persisted they check my heart. Luckily so, I was diagnosed with Shones Syndrome and the consultant said if that had been a week later I wouldn’t be there! I had my first open heart surgery at six months and first artificial valve at two years old. I have since had three further open-heart operations.

I’ve never hidden my scars but neither was I proud of them. At university I met a friend with Crohn’s disease. She made me realise I should be proud, as she said it: “scars are earned, tattoos are bought”. I don’t let my heart condition define me or hold me back! I have been to university completed a BSc, PhD, and married my wonderful husband. We now have two very beautiful girls – Ailsa was born at the beginning of 2013 and Iona was born in October 2014. I feel very blessed and thankful for my scars. If I didn’t have them I wouldn’t be here!

Karen Maclachlan (25) is a Graduate and lives in Glasgow. She was born with Anomalous Left Coronary Artery from the Pulmonary Artery (ALCAPA). This is where the left coronary artery, which carries blood to the heart muscle, is connected to the pulmonary artery (the major blood vessel that takes oxygen-poor blood from the heart to the lungs) instead of to the aorta (the major blood vessel that takes oxygen-rich blood from the heart to the rest of the body).

Karen’s story

On 30th November 2012 I walked in my front door and had a sudden cardiac arrest. My mum performed life-saving CPR until the ambulance arrived. I was in hospital for a month while the doctors tried to figure out what was wrong. They were stumped so I had surgery to have an ICD fitted.

A few months later my cardiologist told me I had a congenital heart defect called ALCAPA. I’ve had it since I was born and had no idea. He said I am extremely lucky to be alive.

I had open heart surgery in summer 2013. I didn’t think a scar would bother me, I don’t think I’m overly vain, but it does. On one hand, it’s a constant reminder of what happened, but on the other it’s a badge of honour. I’m still alive and my scar is there to remind me that every day is a gift, not to mention the marvel of modern medicine!

I’m still coming to terms with everything that happened in the last two years so when I saw the date of the photo shoot (30th November) I thought it was a definite sign that I had to share my story and take part.

Scarred FOR Life 2

Following the success of the first exhibition, a second Scarred FOR Life exhibition was created, which was held at the University of Suffolk in 2016. Below are their stories:

They are Bernhard Reed, Claire Choong, Ella Stanley, Keaton Stone, Raksha Agheda, Richard Barnes, Steven Bradley, and Vikki Irwin. Sadly Raksha passed away since the exhibition. Our thoughts are with her family and we haven’t included her images.

Bernie Claire Ella Keaton Richard Steven Vikki

Bernhard Reed 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.”

Until I had surgery when I was nine years old I could only walk short distances and was mostly ferried about in a pushchair. After my operation in 1957 I was able to get around on a tricycle, but I still could not walk any distance.

As a child, I could not partake in any sport, swimming or walking. I spent a lot of time at home as I was not able to go out and play with other children. I would faint daily when I was young, however as I grew older it was less frequent.

After my third operation, in 1961, I attended a special school until 1964. I worked for 40 years until I was medically retired in 2004, when I had my fourth operation.

When I was in my teens to mid-twenties I was aware of my scars, as people did tend to stare but, as time had passed, I don’t really think about them.

If I were to be asked what my hopes are for the future, I would say my hope is to achieve what I can each day. I do feel myself slowing down in recent years, however I enjoy visiting different places with my wife and we are looking forward to the Somerville Foundation Stirling weekend in July.

Claire Choong has Transposition of the Great Arteries, Ventricular Septal Defect and Pulmonary Stenosis. She has had surgery twice, 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.”

I used to try and hide my scar because I didn’t want other children to notice it or ask me about it. I always feared people making a fuss and was very self-conscious. As an adult, I became less bothered about what people thought about my heart condition, and now I just explain it to people if they ask about my scars, which they very rarely do.

I think it’s much worse to have surgery as an adult because you’re more aware of what is going to happen to you, as well as the risks involved, and you remember more of it afterwards as well. I’ve been feeling better since I had my pacemaker fitted in 2009, although my heart has got a bit worse since I had a baby, our daughter Anna, in 2014.

I still suffer from anxiety and a lack of self-confidence which I think are rooted in my childhood of feeling ‘different’ and unable to do things that other people could do. I find myself being more tired nowadays too. Consequently I’m doing fewer things, which makes me feel guilty (especially when I don’t do so much with Anna) and lazy, even though I know it’s OK to rest. I’ve also started to miss out on things I used to do for myself, like sing in choirs, because I’m too tired from working and looking after Anna, but maybe this is just part of being a parent!

I’m quite happy with my scars now. They don’t bother me at all, really, and I don’t try to cover them up. I think my heart condition is probably the most interesting thing about me, so I don’t really want to hide it!

I hope to be as healthy as possible, in the future, for as long as possible, and I would particularly like to see my daughter grow up to be happy and healthy. I hope to remain ‘able’.

I am afraid of my condition getting worse and my life becoming more limited and having less control over what happens to me. I’m also afraid of having any more medical procedures, which I will have to at some point. I don’t want to have any more things done to me.

I think I still want to be ‘normal’, even though I know there’s not really any such thing.

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

“Just before my 21^st 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 21^st 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.”

I was born with Transposition of the Great Arteries and at five days old I had an arterial switch operation. Then at three years old I had a reconstruction of my left pulmonary artery, but obviously all I ever knew of that was the scars running the length of my chest, and the stories told to me by my parents.

Growing up I was very lucky as my heart condition was under control and didn’t cause me too many problems, other than several closed heart procedures. It only became obvious to me that I wasn’t quite the same as my peers when it was time for P.E. and the dreaded changing rooms. I don’t think the stares or the comments ever became easy to deal with, but I had lovely friends who always looked after me.

I remember going to Alton Towers and not even considering my heart condition. I knew I had to avoid some rides, but was not prepared to only be allowed to ride the small children rides. It was hard knowing I felt fine and just wanting to have fun and be like everybody else.

I didn’t really know I was that ill, until just before my 21^st birthday. I received the devastating news that my left coronary artery was blocked and had been since my first operation. I was horrified and so freaked out, as they told me I might need a triple coronary heart bypass, which meant that they would cut into my legs and arms to harvest veins. All I wanted to do was plan my 21^st birthday party!

Instead I became too scared to do anything; I felt betrayed by my own body and did not want to face another operation. I was fortunate enough that they managed to only use veins from my chest walls and used the original scar on my chest to perform the whole operation, which luckily turned out to be a single coronary bypass.

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 get dressed and carry on with the day.

The other week, for the first time after my operation, I chose to wear a low cut dress and show off my scar. Even though people may look and whisper, or even ask outright what it is, I know that nobody can ever put me down for my scar. It is my battle scar and proof that I can conquer whatever life throws at me.

Keaton Stone 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.”

I was born blue and rushed straight into Intensive Care. I had my first operation at 11 months old, the Senning procedure, as I had been diagnosed with Transposition of the Great Arteries. I grew up to be a healthy child but the doctors took me off games at school just in case.

My Mom bought me ‘The Usborne Guide to the Universe’ when I was four years old and thus began my lifelong passion for astronomy.

As I grew up a little more, I got into videogames massively, then music at around 13. My passion for music led me to join a band, and then I formed my own and became the songwriter. We had momentary success and played all over the country. The band later split and I didn’t know what to do with my life until one day I saw a job for the BBC by chance and amazingly beat lots of people to get it and then started as a runner on ‘Gardeners’ World’.

My love of astronomy led me to work on ‘The Sky at Night’ and I was honoured to work closely with Sir Patrick Moore who was my hero. That led to many other shows and I have worked on every ‘Stargazing Live with Brian Cox’. My work has also meant that I’ve been lucky enough to film at many NASA sites and had amazing access to play with Mars rovers and space probes being built.

I also worked on ‘Volcano Live’ in Iceland with Kate Humble and was privileged to work with Stephen Hawking on a documentary about his life. I’m also close to Buzz Aldrin and his family now and even took them to Stonehenge for a day out last year.

I am so incredibly lucky to have worked with many wonderful people and visited incredible places all around the world. I love filming and still work on music on the side, with my own album and a pop album for a new female artist. I now live in London but go home to Staffordshire as often as possible to tickle my three beautiful little nieces.

I hope the future is bright for me. I do feel myself slowing down slightly lately, but that might be age!

I am proud of my scar and what it means and I won’t let being a heart patient stop me living my dreams and life to fullest. I know I’m very lucky and I do realise not everyone with a congenital heart condition is as fortunate as me, so I thank my lucky stars.

Richard Barnes 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.”

My school years were difficult as I wasn’t able to play sport and spent many hours stood on the touchline, watching football during the compulsory games lessons. However, the scouts helped me join in with outdoor activities and my family and friends were very supportive.

Being born in the 1960s I knew that the chance of surviving to adulthood was about 50% but the death of fellow heart patients still came as a shock. Survival rates were low. At 13 years of age my first open heart surgery was an eye-opener, one of my friends on the ward didn’t survive her operation and I found another cardiac patient dead on the floor of the bathroom. Sometimes I felt guilty at having survived when so many others didn’t. The mental scars are sometimes deeper than the physical ones.

My most recent open heart surgery involved cutting through my old scar and replacing it with a new one. My current scar is a lot tidier and neater than my previous scar which was quite wide and stood out more. I’d had my old scar for 37 years and it is quite odd to look in the mirror and not see it any more, in a way I miss it. When I was a teenager I was conscious of my scar, especially when I went swimming (it went blue in the cold) and was glad when my chest hair grew, helping to hide it.

Now, I have a mechanical valve fitted and I hope to lead a long and healthy life (albeit a slightly noisy one with the background click, click, click). My fear is that something may go wrong and I leave my wife and children on their own.

Steven Bradley had his first surgery at 18 months old and more recently has had two mechanical valves fitted. His five 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.”

My own story is probably very similar to others in that I had an operation at around 18 months and then went through school relatively well. It is when I moved into adulthood that my story and life began to change.

I have always played sport and was encouraged to do so by my parents. I was physically active and able and have travelled independently through Asia, things that I am very proud of.

I was discharged from child services when I was 18. I then started having a few issues and was lucky enough to end up at the Queen Elizabeth Hospital in Birmingham. I was operated on in 2007, where I had a mechanical valve fitted, and one repaired.

In 2008, I was chosen to run as a Medtronic Global Hero. Global Heroes is a cooperative effort between the Twin Cities in Motion and the Medtronic Foundation. Each year, 25 athletes are selected to run as a team in the Medtronic Twin Cities Marathon or the Medtronic TC 10 Mile. Even with my heart condition I was able to run a half marathon in the USA.

A few weeks after I returned I saw my consultant and was informed that I needed another valve replacement. I now have two mechanical valves.

I work in disability sport and coach a men’s hockey team. I recently coached a team of disabled hockey players in a European tournament in London where we played against Spanish, German, Portuguese and Italian national teams.

I am immensely proud of the role I have and the fact that I am able to empathise (slightly) with some of the people I support through my employment.

There is maybe one different angle to my own story and that is that I have a son and a daughter. My son is five years old and during pregnancy we found out he was going to be born with a heart condition. This was really tough to deal with, I felt quite guilty and 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. There are limitations for both of us, but I hope that I am able to inspire my son to always have a go and get stuck into life!

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.”

I was born in 1977 with an Atrioventricular Septal Defect or AVSD for short. I wasn’t diagnosed at birth but two months later, when I got a cold and much to my parent’s horror turned blue and stopped breathing. I was treated at Great Ormond Street Hospital and in 1979 underwent open heart surgery to repair the hole in my heart and also rebuild my heart valve. Luckily I survived. I know I was one of few at that time.

I lead a completely normal childhood. I did all kinds of sports; I rode horses, I went skiing and never gave my condition or scar a second thought. Unfortunately, at university when I was 21, I became ill and was told my mitral valve had a severe leak and I needed more surgery. The operation was a success but going through this as an adult was very different to going through it as a child. Only those who have gone through something like it, can understand the physical and emotional toll it takes.

In 2001 I fell pregnant with my son Max. He was 8lbs 7oz at birth, with a healthy heart. He’s now 14, almost six foot tall and has a healthy appetite. I work full-time as a journalist for the BBC and have enjoyed a varied career. I am married and have a step-daughter as well as my son.

Every day I wear my operations for all to see, I am proud of my scars. They may have faded with time but what they represent is always with me; my determination to survive as a baby, as a child and as an adult. They are why I am here and why I am the person I have become.

I know too 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, as it does, but you can’t live your life according to what might happen only what has, and so far I have survived.

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