British Heart Foundation

Understanding Congenital Heart Disease

Every year nearly seven out of every 1,000 babies born in the UK have some sort of heart defect – that’s one in every 145 babies born. As a result of routine screening during pregnancy an increasing number of defects, particularly the complex forms, are being diagnosed before birth. In fact, around 60% of congenital heart disease is diagnosed in babies aged under a year, 30% in children (aged 1-15), and 10% in adulthood (16 years and over). Sadly about half of these babies will need either medical treatment or surgery and even with treatment, congenital heart disease remains a substantial cause of disability and death in childhood. In most cases the cause is largely unknown.

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Registered Charity in England and Wales (225971)




  • Health/WellbeingHealth/Wellbeing
  • Medical ResearchMedical Research


  • Children (3-18)Children (3-18)
  • Older PeopleOlder People
  • Women & GirlsWomen & Girls
  • Young People (18-30)Young People (18-30)
  • OtherOther



Professor John D Brook carries out BHF-funded heart research at the Institute of Genetics at Nottingham’s Queen's Medical Centre. His research aims to understand the genetic causes of faulty heart development, which affects around one in 145 newborns. Professor Brook and his team of researchers are trying to identify every ‘heart gene’. These are the genes that need to be ‘switched on’ in sequence to transform a cluster of cells in the foetus, into an elegant beating heart. The team aim to produce a ‘Genetic Regulatory Network’ – deciphering and recording all the steps that take place during normal heart development. They also aim to produce a genetic ‘map’ for the developing heart, which can then be used as a template with which to compare DNA samples from patients with heart problems, to determine where and when the process faltered for them. "We are still at the early stages of building the map, but with continued support from the BHF we hope to complete this in the next few years. This map will allow us to gain a better understanding of which genes are involved in making the heart, how they do it and what goes wrong when they are faulty. I hope this appeal will touch the hearts of people so we can help mend the hearts of children.” Professor John D Brook The total cost of this project is £1,095.433