Living with . . . congenital heart block from birth
Liza Morton, from Falkirk, Scotland, is a chartered counselling psychologist and a voluntary campaign manager for the Somerville Foundation, which supports young people and adults born with a heart condition. Liza has congenital heart block and has needed a heart pacemaker since birth. She has one son, who is nine years old.
Talk us through your life with the condition so far
I was born with complete heart block so I’m completely dependent on a cardiac pacemaker. When I was born I quickly went into congestive heart failure and was fitted with an internal pacemaker. In 1978 this was very experimental, and at 11 days old I was the youngest person in the world at the time to be fitted with one.
Growing up I was quite a poorly child. I was in and out of hospital all the time. Although the doctors said I should be able to function normally, I couldn’t exert myself because the early pacemakers were set at a fixed rate regardless of what I did.
Hospital was as familiar to me as school or home. My cardiologist and his team were like family to me.
By the time I was seven I’d had heart surgery five times. I also had a hole in the heart, an atrial septal defect, corrected by open heart surgery when I was 12. It has been relentless. My first variable rate pacemaker was fitted when I was 12, which helped me do more. I had a lot of surgery when I was sitting my exams (at school and university), so there have been a lot of extra challenges to negotiate around growing up.
There was no transition [from child to adult services] in those days, so it was difficult. We desperately need more specialists in adult congenital cardiology. We’re the first generation of adult patients—in the 1940s, only 20% survived, but now it’s 90%. It was hard leaving the paediatric team. I went from being on a paediatric ward with all these babies crying, then got followed up in a geriatric department where people were asking “what are you doing here?” Things are better now—we have specialist services in Scotland. But it’s an uphill struggle. We desperately need more young doctors coming through to specialise in congenital cardiology.
What do you remember about how your diagnosis was given to you?
I don’t remember being told. I do remember lying in bed as a young child wondering what it must feel like to be normal, what other children felt like. I remember mum and dad got me a book for Christmas with characters from Sesame Street to explain about it. I ripped it up. I got quite angry, which was unusual for me, but I guess it triggered something. It was always there.
What are the things you regularly have to think about during the day relating to your condition?
It’s quite an invisible thing. I have got scars but I look “normal,” which is good and bad. I always have this choice to make—will I tell people or not, and when will I tell people?
I’ve always had symptoms such as chronic fatigue. On a day to day basis I don’t think about it, but that’s because I have set my life up to be able to manage it. I work part time; I couldn’t work full time because I get tired. I had to negotiate around that in terms of studying and planning my career. I could never do a physically demanding job—I’ve always been quite studious. As long as it’s well managed and my pacemaker is working, I’m fine and I have a reasonable quality of life.
When I was growing up, my school knew about my condition and I’ve told my work, but I don’t wear anything like a bracelet or necklace [identifying the condition]. I don’t want to advertise it. I want to be seen and known as me.
What’s the most annoying thing about your condition?
I wish the battery life lasted longer in pacemakers. I’m only 37 and on my tenth one now. As pacemakers get more complicated and can do more things—which is good—the batteries don’t last so long. If you’re in your 80s it doesn’t matter so much. But it’s in the back of my mind. For example, at my last check-up, they said there’s only seven years [of battery life] left. It never goes away and each time it becomes more complex. It is important that my care providers understand that being paced from birth introduces complex pacing problems and I need access to specialist care.
What’s the most and least helpful thing a doctor has done for you?
The most important thing is how doctors communicate. I’ve had awful experiences and wonderful ones. The best doctors are the ones that have communicated with me as a person and have been honest. They have validated my symptoms, acknowledging “this is experimental—we don’t know” if they weren’t sure. Good doctors also take the time to listen to me and consider my care holistically. They understand it’s life long, and they just get it. They make me feel we are working together and I can trust them.
Others don’t. For example, a few years ago I had a difficult experience in accident and emergency. I knew I had an intermittent fault [with the pacemaker]. The cardiologist on duty said, “You have got a virus and I’m so sure it’s a virus I’m going to discharge you,” which he did. Just the thought I could die unnecessarily, having fought so hard to be here—when somebody who isn’t a specialist, for them to not to bother to call a specialist or listen to me—made me feel so powerless, vulnerable, and angry. You are vulnerable when you are a patient and have to put your trust in medics. That’s not an easy place to be when they have all the power. I guess, such difficult experiences have driven my advocacy work. As a first generation survivor, I can only accept these experiences if they inform change for the next generation. I was motivated to train as a psychologist to make sense of my experiences, and I am passionate about using psychological knowledge to improve the experience of living with a life threatening condition from birth.
What’s the best piece of advice you could give to a student doctor?
Listen to patients. Never underestimate the importance of good communication. Hear what they are telling you; try to put yourself in their shoes.
If somebody is really poorly, really unwell, try to disturb them as little as possible. When you’ve had an operation and you’re poorly—the lights go on and they come in poking and prodding you. Just be considerate. Remember, I can still hear you when you’re at the bottom of the bed talking about me in the third person. I have had doctors bring in trainee doctors and just start pointing at my scars asking for a diagnosis and details about prognosis, without talking to me. I’m a person. Always see the person.
Also, looking at things holistically is important. Think about the emotional experience, especially when someone has lived with a life threatening condition from birth.Anna Sayburn, freelance journalist
Correspondence to: email@example.com
Competing interests: None declared.
Liza Morton can be contacted at @DrLizaMorton.
Provenance and peer review: Commissioned; not externally peer reviewed.
Cite this as: BMJ 2015;23:h5138