The Minister for Sport, Health Improvement and Mental Health opens a photo exhibition of adults in Scotland born with a heart condition, baring their scars in celebration of life today (Thursday, February 12th) at Kelvingrove Art Gallery and Museum.
The exhibition, called Scarred FOR Life, was created by three friends with CHD, Dr Liza Morton, Caroline Wilson and Jenny Kumar, on behalf of adult heart charity The Somerville Foundation, to raise awareness of how congenital heart disease (CHD) impacts on adult life and to change the perception of scars.
CHD describes any heart condition present from birth. It is a diverse group with a wide variety of conditions varying in severity. It is the most common complex birth defect, which affects 1 in 125 babies and has no cure. In the 1940s, only 20 per cent of infants born with a heart condition survived, whereas today around 90 per cent are now reaching adulthood.
Jamie Hepburn MSP officially declared the exhibition open – during CHD Awareness Week – before an audience of specially invited guests, including the ‘models’, their families and friends, congenital cardiac professionals and members of the Falkirk Round Table who made the exhibition possible raising £10,000 for the charity’s work in Scotland with a fundraising cycle to Paris.
Jamie Hepburn MSP, Minister for Sport, Health Improvement and Mental Health, said: “This is a very moving and valuable exhibition which shows the human face of congenital heart disease, a condition which affects thousands of people in Scotland. The people who have courageously volunteered to feature in these photographs are a real inspiration to us all.
“The good news is that thanks to the advances in technology, and access to specialist treatment and support, more people than ever before are living long and happy lives with CHD. I hope that this exhibition will go some way towards raising awareness, and promoting a better understanding of a disease that some people might not be aware of.”
Dr Liza Morton, who is a model in the campaign and also Scottish campaign manager for The Somerville Foundation, said: “We’re absolutely delighted that Mr Hepburn is officially launching the Scarred FOR Life exhibition. With more adults than children now living with CHD, his support demonstrates the importance of focusing the lens on adults with CHD – a population estimated at 16,500 in Scotland.
“The participants’ stories movingly convey both the vulnerability and sheer strength of character needed to survive, mixed with a healthy dose of gratitude to be alive. We hope this campaign makes people more aware of the condition, the charity and the huge challenges we face – physically and mentally – especially as many of these adults require unique, lifelong care and support.”
Chair of Glasgow Life, Councillor Archie Graham said: “We are delighted to host Scarred for Life at Kelvingrove Museum. Each person’s story really touched me. The art that hangs on the walls in Kelvingrove is often said to inspire and so I think its fitting that this exhibition is held here, because each of the people featured in it are an inspiration to so many. In their own words they make it clear that a medical condition does not define a person and it certainly doesn’t hold them back from all they want to achieve in life.
“Kelvingrove is a wonderful place to simply stop and reflect for a short time in our day and I think that by sharing their experience these people encourage us to marvel at the wonder of modern medicine, the amazing people who serve in the NHS and the many others who have walked a similar path. And in doing so I think the organisers have created something incredibly positive and should be commended.”
Following a callout for heart patients in November last year, fashion and portrait photographer Kirsty Anderson transformed eight participants into works of art, which will be on display in the Central Hall until 15 March.
The models who represent a diverse range of heart conditions are: Karen Maclachlan (25), a graduate from Glasgow; Heather McDougall (29) a research scientist who lives in Fife; Scott Burrell (36) a development scientist from Lanarkshire (case study below); Liza Morton (36) a psychologist from Falkirk (case study below); David Magennis, a language teacher who hails from Aberdeen; Caroline Wilson (39) a journalist in Glasgow; Maggie Ross (43) a senior outcome development worker from Glasgow (case study below) and Roderick Skinner (72) a retired EU civil servant from Fife.
CHD Awareness Week runs until 14 February 2015.
Scarred FOR Life is open to the public from February 13th to March 15th 2015 in the Central Hall at Kelvingrove Art Gallery and Museum
Case study: Scott Burrell
Scott Burrell (36) is a development scientist and lives in Lanarkshire. 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 said: “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 this year 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.”
Case study: Liza Morton
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 packemakers 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.
Case study: Maggie Ross
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 here, alive”. These scars are mine, a part of ME.
-Ends-
For further information, portraits, case studies & interviews, contact Jenny Kumar on 07989 557198 / jenny@jkconsultancy.com
Notes to editor
- Photos from the launch will be issued to picture desks from our photographer Peter Sandground on the day.
- Kelvingrove has recently been voted in TripAdvisor’s list of top ten museums in the UK.
About The Somerville Foundation
There is estimated to be over 250,000 adults who were born with a heart condition, in the UK. Over half will experience medical and social problems at some time in their adult lives. Many can be ‘cured’ in the first few years of life but others require lifelong follow up. Advances in heart surgery made in the last 50 years, combined with patients own fighting spirit, have ensured that more congenital heart patients are surviving longer than ever before.
The Somerville Foundation works with patients born with a heart condition (congenital), providing practical and emotional support, and enabling them to take control of their lives and manage their own heart condition. Thanks to advancements in medical treatment, today more and more people born with heart conditions are living long, full and happy lives.
We make it our Mission: To ensure that GUCH patients enjoy access to every opportunity, are free from discrimination and are fully supported throughout their life.
Our Vision is: A world where everyone born with a heart condition receives excellent medical care, where GUCHs lead happy, healthy lives and reach their full potential.
