Congenital heart disease

A small girl

Congenital heart diseases is diagnosed in at least 4,000 babies born in the UK each year - babies like Niamh, who was diagnosed with a rare heart condition at the age of just 13 weeks.

Doctors are able to diagnose and treat many different types of congenital heart defects today, thanks partly to the decades of heart research discoveries that have gone before.

Niamh's grandmother Marilyn reflects on their experiences: "The facilities, the equipment and the care, were second to none. Although it was a harrowing time we were privileged to receive the benefits of all the hard work of research over the years."

Niamh had to have an operation, but just a week afterwards in October 2006 she was recovering so well that her parents were able to take her home in plenty of time for a very special Christmas.

Although it was a harrowing time we were privileged to receive the benefits of all the hard work of research over the years.

Niamh's grandmother

Improved survival

The impact of advances in diagnosis, treatment and care is stark - in the 1950s around eight out of ten babies with a complex congenital heart condition died before their first birthday.

Today, thanks to advances in treatment and care, eight out of ten babies with congenital heart disease grow up to be adults.

Mapping heart defects

Picture of Professor Robert Anderson, a retired congenital heart disease researcher.Now retired, BHF Professor Robert Anderson and his team at the Institute of Child Health mapped out the details of heart defects. This knowledge, combined with advances in imaging technology, means cardiologists can give these babies the best chance of life by identifying and treating abnormalities as early as possible.

Heart Matters speak to Professor Anderson about his pioneering research.

Surgical techniques

BHF Professor and famous surgeon Sir Magdi Yacoub developed surgical techniques to treat complex congenital defects. The ‘switch’ procedure is now used to correct a defect in babies born with wrongly connected heart vessels.

Specialist support

As they grow, these patients now have access to specialist support throughout their lives thanks to BHF Professor John Deanfield and Dr Jane Somerville, who established the new cardiology speciality of grown-up congenital heart disease (GUCH).

There is also a network of specialist BHF heart nurses which provides vital care and support to patients and their families across the country.

What’s next for congenital heart disease?

We continue to support research to improve the understanding, diagnosis and treatment of congenital heart disease.

Teams across the country - including those led by BHF Professors Bernard Keavney and Shoumo Bhattacharya - are investigating the genetics behind why some babies are born with heart defects, with the ultimate aim of preventing them altogether.

Kinder, gentler treatment for children’s hearts

Some children need open-heart surgery to save their lives, but the operation itself can damage a child’s heart, causing scarring that puts them at risk of sudden cardiac death later in life. 

BHF researcher Professor Massimo Caputo wants to find ways of protecting children’s hearts during surgery. With his colleagues at the University of Bristol he is also looking at ways to prevent the need for children born with a heart condition to have repeated operations.

Professor Caputo is Calum Morris’ surgeon. This month Calum will have his fourth heart operation for a severe heart condition called Truncus Arteriosus.

Help us to continue to fund life saving congenital heart disease research.