Growing Up With a Congenital Heart Block

Growing up, people told me to concentrate on the positives. But they didn’t understand that we are our stories and mine emerged from difficulty. When they rejected that they rejected part of me, and they asked me to do the same. I didn’t understand that at the time. I just knew that my heart condition was hidden. That most of the very bad stuff happened where no one else could witness it. And it wasn’t OK to talk about it openly because it made people look at me with disgust, pity or alarm. Children don’t like that. So, I learned to keep that part of myself private. I liked it better when they 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. But that little girl, in a cardiac ward, is central to who I am.

 

I did not have miserable childhood. I was happy enough. It was more considered. There is a lot of common sense involved in safely navigating life with a heart condition. It means being old before your time, and not just physically. So, for example, when my friends were doing headstands I had to think it through. When they spontaneously flipped themselves upside down, I observed. It looked easy enough but the thought of trusting my own body to turn itself upside down seemed impossible.

I would run through the possibilities: What if a lead came loose? What if my pacemaker fell off my heart? Was it worth risking my life? But everyone else was doing it, why should I be different again? How could I explain to everyone why I wasn’t joining in, without drawing attention to myself? When you put too much thought into anything like that it loses its joy. I tried it once, falling flat on my back, smack onto the grass. Although nothing cardiac happened, I didn’t bother trying again. This is the kind of thing I mean. What other kids took for granted wasn’t always mine to do so, like trusting my body.

We didn’t know how long I would live. Uncertainty was everywhere. The doctors would try to give us confidence in my life. But we figured out pretty early on it was false confidence. Nobody really knew anything. That’s what happens when you grow up with pioneering treatment. 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. My heart beats at just 40 times a minute, which is not nearly often enough to keep me alive. So, they took me to theatre and implanted a pacemaker on my tiny heart.

In these pioneering days, the pacemakers were unreliable. They were also 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 was a tenuous journey. By the age of 7, I had been fitted with five pacemakers each by thoracotomy. I now host my tenth and counting.

Years later, I found a research paper detailing the pioneering work of fitting implantable pacemakers to infants during the late 70’s and early 80’s. I am the youngest baby in the study. For each child they weighed up the pros and cons of fitting a pacemaker. I was doing so poorly there was not much choice. Some of the children who were healthier than me were not fitted with one, the risks deemed to great to justify. Some of them died during infancy. I feel uncomfortable and sad about that.

I am not sure I understood that I might die. But, I knew I might not live. I know that doesn’t make much sense but I don’t remember planning in my head for an adult future like other kids did. I didn’t imagine my wedding day, having children or where I might live or work. The thought of dying didn’t really scare me. I’ve always had a sense of spirituality, peace and calm around death. It is life that’s caused me all the trouble.

I don’t want you to think I hated the hospital, because I didn’t. It was like a second home, the one place where I felt like myself. I didn’t have to pretend to be normal when I was in the hospital. And, my cardiology team was there with me. That 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. Learning the stuff of existence from scratch, time and time again; to breathe unaided, eat, go to the toilet, talk, walk, with the goal of going home and living as normal a life as possible.

Dignity is something you try to cling to in the hospital. It would be helpful if this was made easier. Lots of small things can add up to the process of being anonymized, dehumanized and disempowered from the starchy, backless hospital gowns, being spoken about in the third person to not being listened to.

When I was around 3 years old, the horror of it all leaked out, momentarily. My mum, brother and I had planted cress seeds in used ice cream containers, one each, filled with soil. I had been quite excited about the notion of growing a plant from tiny seeds by ourselves. 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. We never planted any seeds again.

The rest of the time I kept a tight lid on it. 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 after all. With this realization dawned a fresh set of 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 was less than normal? What if I ended up homeless, jobless and alone? I wasn’t preoccupied by these worries but they were there nonetheless, unspoken, vaguely articulated in the back of my mind. Part of me thought, “What the hell?,” propelling 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 11-year-old son. I have worked hard to educate myself so that I can work part-time as a Psychologist. I am blessed in many ways. And the fact of what it has taken to get me here makes me enjoy everything I have 10 times over. But it isn’t just as simple as that. If life has taught me anything, it is that happiness does not come from ticking the boxes. It 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.

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Thinkstock photo via jetFoto.