Name: Liza Morton

Age: 41

Age Diagnosed: At birth

Condition: Congenital heart block and a surgically fixed atrial septal defect (ASD)

Growing up, I tried to focus on the positives but we are our stories and mine emerged from difficulty. My heart condition is hidden so most of the very bad stuff happened when no one else could witness it. Early on I sensed that it wasn’t OK to talk about my experiences because when I did people looked at me with pity or alarm so I learned to keep that part of myself private. As a child, I liked it better when people said I was brave. So, I was brave and stoic. Best of all was when I was treated just like other kids. It took a tremendous effort to function like other kids but it was worth putting the effort in, even though it left me feeling shattered.

I did not have miserable childhood. It was more considered. When my friends were doing headstands, running around or taking part in gym, I observed. What other kids took for granted wasn’t always mine to do so. Uncertainty was everywhere. That’s what happens when you grow up with pioneering medical treatment, as a “miracle baby.” I was the youngest in the world to be fitted with a cardiac pacemaker when I was just 11 days old, in 1978. I was born with complete heart block.

In those pioneering days, the pacemakers were less reliable and set at a fixed rate, far from physiologically normal, limiting me physically. The first one failed and I was returned to theatre less than 24 hours later, suffering from a stroke in between. I spent the first six weeks of my life in an incubator before going home where my mum did her best to love me better. It has been a tenuous journey. By the age of 7, I had been fitted with five pacemakers each by thoracotomy. I also required open heart surgery to fix a hole in my heart in my early teens. Last summer, I was fitted with my eleventh pacemaker after waiting for nearly a month in hospital on risky surgery to explant and replace pacing leads.

Growing up, I didn’t dislike hospital. In many ways it was a second home; the one place where I felt like myself. I didn’t have to pretend to be ‘normal’ and my cardiology team was there with me which made me feel safe. Yet, unimaginably horrible things happened to me there. I was taken from my mum by strangers to a sterile room to be “sent to sleep” and made better by way of needles, oxygen masks, scalpels and the overwhelming smell of antiseptic. It is all a blur of feeling woozy, vomit, cardboard sick bowls, the metallic taste and smell of blood, bleeping of a heart monitor, broken bones, breathlessness and being attached to wires.

When I was around 3 years old, the horror of it all leaked out. My mum, brother and I had planted cress seeds in used ice cream containers. I had been quite excited it. We placed the containers underneath the sofa in our living room to germinate. When we retrieved our boxes the soil was punctuated with rows of neat, green stalks, each topped with two small leaves. They filled me with complete revulsion, a whole bodily kind of disgust. Usually a quiet child, I shocked my family by screaming uncontrollably. To me, the cress protruded through the soil, just like black wire stitches did through my skin after surgery; lined up, like sinister, unwelcome, unnatural invaders forcing their way through. My mum threw them in the bin.

I think I should have been taught ways to express my distress. But, the truth is no one really knew that at the time. Everyone who cared was just muddling along doing their best for me, and keeping themselves together. You just get on with it when you don’t have a choice.

As a teenager, it became apparent that I would probably survive into adulthood and beyond. This raised fresh concerns. How could I ever hold down a proper job when I needed to sleep so much? Would anyone ever love me enough to take on the burden of my health, accept my scars and the fact that I felt less than normal? Could I have a family? Yet, this also propelled me to live in the moment, knowing all too well here and now is all any of us can claim.

Although there is no cure for my heart condition, I am too old now to die young. And I have achieved the things I didn’t dare dream of. I am married, I have a healthy 12-year-old son. I have worked hard to educate myself so that I can work part-time as a Psychologist. I am able use my lived experience to inform my research, campaigning and advocacy work. I am blessed in many ways. And the fact of what it has taken to get me here makes me enjoy everything I have many times over. Yet, if life has taught me anything, it is that happiness comes from feeling whole, and the light and the shadows cannot be separated – our stories only feel authentic when they are complete. For me that has meant accepting that part of me will always be that little girl with a heart condition and giving her a voice.

Adapted from Growing up with a Congenital Heart Block in The Mighty

Liza works voluntarily as Scottish Campaign Manager for The Somerville Foundation and is involved in ongoing research & advocacy to improve psychologically informed care. You can find out more & read her publications at www.drlizamorton.com

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