New study reveals the reality of growing up with congenital heart disease

13 November 2017        

Category: Research

New research that we’ve released today reveals the struggles of hundreds of families coping with the life-long effects of congenital heart disease. 

Child's drawing - Child proud of scar

BHF-funded researcher Dr Rachel Knowles at UCL Institute of Child Health asked 436 UK children aged 10-14 who have all undergone heart surgery, to put pen to paper and send in drawings and first-hand accounts describing what it’s like living with a heart defect.

The study shows that for many children, living with a heart defect had a significant impact on their quality of life, and ability to participate in typical childhood activities, which often negatively affected their emotional wellbeing.


Many children mentioned physical participation, specifically feeling upset and isolated that they are unable to keep up in a race, feeling left out of games and feeling fatigued after playing with their friends. One child said that they “are weaker and slower than everyone else… you can get left out a lot.” Another wrote that he was told to “help referee during matches… whilst others have fun.”

Children’s scars were a recurring theme in the study, being featured in nearly a quarter of all drawings and quotes. Most focused on children becoming self-conscious about showing it to others, with one child explaining that they “get sick of people staring at my scar, asking questions all the time”. However, a small proportion of children disclosed that they are proud of their scar because it showed just how hard they had fought to survive as a baby.

The Parents

Child's drawing - Child being bullied at school because of their heart condition

We also spoke to around 600 parents of children with congenital heart disease to find out their concerns about what long-term effects their child’s condition is having on their wellbeing

The survey showed that:

  • Nine out of ten parents say they lose sleep over their child’s condition
  • Nearly two thirds of parents worry their child will be held back at school and feel concerned they are often made to feel different to other children. 
  • Nearly half also worry that their child will find it more difficult to make friends because of their condition.

The stories of these children show the continued need for life saving research into congenital heart disease, which affects around 4,000 UK children each year. Although recent advances mean most children diagnosed with a congenital heart defect grow up to become adults, many face the prospect of multiple surgical operations, and sadly around 400 children each year still die before they reach school age.

Dr Rachel Knowles, Lead Researcher of the study said: “Understanding both sides of the picture is crucial in ensuring children with congenital heart disease are not left behind or left out.”

“Whilst the BHF’s research has led the way to improve how we prevent, diagnose and treat congenital heart disease, it is also vital that teachers, parents and doctors support young people with a congenital heart defect to learn ways to cope with their condition, so they can lead as much of a full and active life as possible.”

Dr Mike Knapton, Associate Medical Director at the BHF, added: “Before the BHF existed, the majority of babies born in the UK with a heart defect did not survive to their first birthday. Today, thanks to research and advances in treatment, around eight out of ten children survive to adulthood.

“Although this is a cause for celebration, we cannot be complacent. We urgently need to fund more research to improve survival rates, and improve the quality of life of young people like these who face a lifetime living with a heart defect, to maximise their health, potential and wellbeing.”

Money raised through the BHF’s Christmas Appeal will help fund the vital research that helps to keep tiny hearts beating. Visit to make a donation to the BHF this Christmas.