How does it feel to live with congenital heart disease?

New BHF-funded research has revealed what makes a difference the quality of life of children with congenital heart defects. We speak to the researcher involved.

A child's drawing about living with congenital heart disease

A BHF-funded project has asked UK children aged 10-14 who have undergone heart surgery to send in drawings and first-hand accounts describing what it’s like living with a heart defect.

More than 400 children replied, and explained how their quality of life is affected by having a congenital heart condition.

Children with less severe heart problems were more likely to be proud of their scar

There was a difference in children’s reactions depending on whether they had a severe heart problem that required regular hospital visits and more than one surgery (this made up about a third of the children), and those who had a problem as a baby but it now has less effect on their everyday life (two thirds of the children).

The main things children mentioned were:

  • Their scar. Children with less severe heart problems were more likely to be proud of their scar, and 79 of these children mentioned it, compared to 17 of the severe group. Some felt that it showed they are a survivor or special. But many children didn’t like other people seeing it, or asking questions about it.
  • Around half of the children with less severe defects (111 children) said that their heart condition was not a big thing, compared to just 33 in the more severe group.
  • Being left out. A lot of children said that they hated being left out during PE, being asked to be referee or hold the finish line, and that they wanted to feel normal.
  • Good friends and teachers who understood and supported them. These were a great source of support.

Dr Rachel Knowles (pictured right), a researcher at UCL Great Ormond Institute of Child Health, who led the study, tells us about her research:

Dr Rachel Knowles"Throughout childhood we wanted to understand what it’s like for children with congenital heart defects, in terms of survival, their health, and also how they and their parents described their quality of life. And what was really nice was that it’s a UK-wide study so all the paediatric cardiac centres in the UK, and the cardiologists who are based there, contributed to this study, so it really was something everyone felt part of.

"I’m not someone who focuses on the disease; I’m much more interested in the patient who has to live with the disease. When we first applied for funding we were unsure if it would interest the BHF, because the research wasn’t just about the condition, it was about children and quality of life. It was really good that they took a chance."

How do you hope your research will help patients?

"I hope it gives children and young people the opportunity to talk about their experiences. It’s not just about the heart and how well it functions, but it’s also about what it feels like to live with a congenital heart defect. I hope this research will help us to understand how we support and make these children’s lives fulfilling, successful, and that they feel ready to face all those opportunities and challenges of being an adult."

How have outcomes for children with congenital heart disease changed during your career?

I hope this research will help us to understand how we support and make these children’s lives fulfilling and successful

"I think for children with more severe heart defects their survival rate has changed, even in the last few years. For example, it’s really quite noticeable how far surgery has come in revolutionising the way in which children with transposition of the great arteries survive.

"I think now we put a lot more effort into transition to adulthood and supporting families. And perhaps also, we are more likely to actually ask patients about their outcomes. We’ve got ways of asking questions that help us understand what life is actually like for the children and their families, and what’s important to them – rather than just thinking of what’s important to us as doctors."

How has the challenge changed as more people with congenital heart disease live into adulthood?

"A lot more thought has to go into quality of life, and how you make that as good as it can be. It’s no longer about ensuring people survive. People now not only survive into adulthood, they survive into late adulthood. Now the question is ‘how do you manage to take part in everything that you want to?’ And ‘How do you make sure the daily lives of people with congenital heart disease are the same as other people’s?"

What emotional impact does living with congenital heart disease tend to have on children?

I think it’s really important to focus on childhood, and understand how this sets children up to become adults

"We asked the children about this as part of the study. Some of the things they talked about were very much what makes them feel happy, what makes them feel sad.

"A real focus for them was whether they can take part in things, and how it made them feel to be with other friends, to be left out, and have to sit out of things – so it’s those social activities. And they were worried about being teased (although this rarely actually happened) and whether they would be seen as different.

"It was really important to them that they would be seen as normal and have friends. I think, more than anything, that’s what made them feel happy and good about themselves."

What do you want to do next in your research?

"Another thing that interests me in terms of heart defects, that I’d like to understand more, is looking at children’s educational outcomes. I think that’s an area that, by looking at data and linking up datasets, we could actually understand better. We could learn how children manage at school and how that influences employment and education after school. I think it’s really important to focus on childhood, and understand how this sets children up to become adults."

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