Born This Way
For every 1000 babies that are born, eight will have a heart condition. This is the most common birth anomaly. 90% of these babies will now survive into adulthood compared with just 20% in the 1940s. There is now an estimated 250,000 adults born with a heart condition living in the UK. We can thank advances in modern medicine for the growing population of adults living with a heart condition from birth. This is a heterogeneous group including people with a wide variety of different cardiac conditions of varying complexity. Currently there is no cure for more complex congenital heart disease (CHD), with treatment and lifelong monitoring required. Survivors can live with uncertainty about how long they will live alongside other potential psychosocial stressors such as growing up feeling different, surgeries and invasive medical procedures, living with implantable devices, facing transplants, uncertainty and complications about having a family, challenges gaining and maintaining employment, social isolation and discrimination, to name but a few. For today’s adult survivors, treatment has often been experimental while their care provision has all too often not evolved in time to meet their needs, and many patients are lost to follow-up.
I am such a baby. Born with complete heart block and an atrial septal defect1, I was attached to an external cardiac pacemaker at four days old. When this restored life, in a world first for an 11 day old baby (in 1978), I was fitted with an implantable pacemaker. I have depend on one, with every beat of my heart, since (a fact that fills me with awe and horror in equal measures). I currently host my tenth pacemaker, and counting, and I face complex pacing problems. Living with a heart condition from birth, particularly as a pioneering case, has not been easy. Until I was twelve years old, pacemakers were set rate, limiting my physical activity. These early pacemakers were bulky and fragile. Broken leads and pacemaker malfunction were common. I had to navigate the normal challenges of growing up with the additional challenges of managing a life-threatening medical condition that would follow me from cradle to grave. As a pioneering case, information about my prognosis and the management of my condition was limited. At times it felt that the emotional and psychological impact was poorly understood, with awareness and understanding in wider society limited. My scars are symbolic of this journey.
Scarred FOR Life
“Yes, I'm scarred WITH and FOR life – and so thankful for it.” - Roderick, SFL Model.
Scarred FOR Life (SFL) is a Photography exhibition I co-created with friends (who also happen to be born with a heart condition) Jenny Kumar and Caroline Wilson, on behalf of The Somerville Foundation. Our aim was to help change the perception that scars should be hidden away, to tell the story of a population hidden in plain sight, and to empower survivors and raise awareness of the unique needs of adults with congenital heart disease. For the exhibition, fashion and portrait photographer Kirsty Anderson captured portraits of eight adults, each born with a heart condition.
|Photo credit: Peter Sandground|
“scars are earned, tattoos are bought” - Heather, SFL model.
Launched at Glasgow's prestigious Kelvingrove Art Gallery and Museum in February 2015, the exhibition has since toured several venues including the Golden Jubilee National Hospital (home to the Scottish Congenital Cardiac Service), Forth Valley Royal Hospital, The Scottish Parliament, The British Cardiovascular Society Symposium at the Royal College of Physicians and Surgeons, and The British Heart Foundation Scotland’s conference at Wolfson Medical School Building, Glasgow University.
Scarred FOR Life was so called to depict both the physical and emotional scars that the CHD population endure FOR life itself. The project employs art informed by psychology and it has been well received by the public receiving national media attention including a five page spread in the ‘Saturday Herald’ magazine and coverage on the STV and BBC Scotland News. Due to its success the project has now been replicated across the UK. Visitors' quotes from the exhibition fuel our drive to continue this work:
Here with a 2 yr old CHD boy. Great to see images out for all to see. 2yr old enjoyed spotting ‘zip lines’, like his own.
Inspiring exhibition. Viewed whilst waiting as our 3 week old son is having open heart surgery at Yorkhill.
Me and my scar came through here today so I could gain inspiration and confidence from these wonderful people so that I too can be proud to show off my scar… Very powerful and emotional today.
I am 11 and I have a heart condition where I only have half a heart and I also have a scar for life.
|Photo credit: Peter Sandground|
“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.” - Maggie, SFL Model.
My SFL 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.”
Morton, L. (Submitted) Born with a heart condition: The Clinical Implications of Polyvagal Theory in Clinical Applications of the Polyvagal Theory: The Emergence of Polyvagal-Informed Therapies edited by Prof Stephen Porges and Debs Dana. W.W. Norton and Company. NY.
Morton, L., Roach, L., Reid, H. and Hallam Stewart, S (2011) An Evaluation of a CBT Group for Women with Low Self-Esteem. Behavioural and Cognitive Psychotherapy, 40(2):221-5. DOI:10.1017/S1352465811000294
Morton, L (2015) What Your Patient is Thinking: The heart of medicine: growing up with pioneering treatment. British Medical Journal, 351: h3881. doi: http://dx.doi.org/10.1136/bmj.h3881
Morton, L. (2015) Scars as a celebration of life. The Psychologist, 28.
Morton, L (2014) Addressing the Psychological impact of Living with a Heart Condition from Birth. Cardiology News, 17(4):6-12.
Morton, L (2012) Healing Hearts and Minds. The Psychologist, 26(9):694-694.
Freeman, T. (2014) The Heart of The Issue: A strong patient voice making a difference (interview), Holyrood Magazine.
Sayburn, A. (2015) Patient Perspectives: Living with…congenital heart block from birth (interview), Student BMJ; 23: h5138.
An Exploration into Psychology, could you benefit? A four part series of articles, featured in GUCH News 2012, highlighting some of the emotional challenges of growing up with a heart condition and some of the different types of psychological therapies available. Reprinted by Little Heart Matters, with permission.
Preparing for and coping with surgery. Patient guide written for The Somerville Foundation.
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.
2 Sadly, one of our models, David, died on the 25th Feb 2015 following complications with his heart transplant. With his family’s permission, David’s legacy lives on in his photograph which remains part of our exhibition and he was proud to know it was having a positive impact. We can only echo his dad’s words “He was an inspirational man. His courage, gentleness and much more will always be remembered. Thank you David, with all our love.”↩