Living with congenital heart disease as an adult

Almost one in 100 babies in the UK are born with congenital heart disease, but what happens to them later in life? Our Senior Cardiac Nurse Emily McGrath hears Katie Miller’s experience of living with congenital heart disease as an adult.

Katie Miller

Katie Miller, 20, from south-west London, was born with several heart problems. She had congenital complete heart block (an abnormal heart rhythm caused by a delay to the electrical impulses that tell your heart to beat); patent ductus arteriosus or PDA (where blood mistakenly flows between two of the major arteries connected to the heart); and a problem with one of her heart valves.

Finding support as a teenager

“The heart block was picked up at a routine scan when my mum was 20 weeks pregnant, and the PDA and valve disease were diagnosed when I was one year old. I had a procedure to close the PDA and when I went into heart failure at four years old, I had a pacemaker inserted. I’m now on my fourth pacemaker.

Until I was 15 years old, my condition didn’t really affect me. I was still doing everything my friends were doing. Then when I got to 15 my health went downhill. I wasn’t able to take part in sports because I wasn’t well enough and when I went out with my friends in the evening, I would have to come home early for a nap because I was so tired. That was quite embarrassing.

When I got to 18 or 19, my symptoms got worse... But my friends, family and university have all been so supportive.

When I got to 18 or 19, my symptoms got worse. Just a short walk to university would make me become very short of breath and sweaty, and that was difficult. But my friends, family and university have all been so supportive.

I’d made friends at ECHO Teen Club, which is a club for teenage heart patients treated at the Evelina London Children’s Hospital, and Evelina’s Pride, a support group for teenagers and young people who are patients at the Evelina. Both are fantastic and a good way to meet people who know what you’re going through.

I have also been to [email protected] events through the BHF. I made some really good friends through that and I loved it. They have just started doing them for older people (up to 24 years old) and I hope to go to one soon.

Katie Miller with her university friends

Katie has made a network of friends at university.

Transitioning to adult support services

When you get to 16, you realise you’ll be leaving the services at the children’s hospital soon and you’re invited to transition days to learn about the adult services at St Thomas’ Hospital. Then I received my appointment letter for the adult services.

In children’s services, the doctors will always speak to your parents. When you are a younger child that’s OK, but when you get older you want them to speak to you. That’s the difference in adult services. They are only talking to me and I prefer that.

One day I will need to think about how this will affect my work and things like having a family

A couple of months ago I had open heart surgery to replace my tricuspid valve. I hate the big scar on my chest; I have to plan my outfit around this. But I am feeling positive about the future. I think now I’ve had my operation my health won’t be that bad, but in the future I know I’ll need more surgeries. One day I will need to think about how this will affect my work and things like having a family.

I am at Swansea University studying cardiac physiology, which is about helping people with heart disease. I was inspired to do this based on my own experience and meeting staff from different specialties. It’s so interesting. I know that it’s for me.”

What is congenital heart disease?

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