NiamhCongenital Heart Disease

Congenital heart diseases are structural abnormalities of the heart present from birth.

They affect around 4,600 babies born in the UK every year, babies like Niamh (pictured right) who was diagnosed with a rare heart condition at the age of just 13 weeks.

Doctors are able to diagnose and treat many congenital heart defects today thanks partly to decades of 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 for us all, 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.

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, over eight out of ten babies with congenital heart disease grow up to be adults.

Mapping heart defects

Baby born with heart conditionNow 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.

The 'switch' procedure

BHF Professor 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. 

Reducing trauma for young patients

With the help of our funding, Professor Philipp Bonhoeffer, pioneered a revolutionary technique of non-invasive heart ‘surgery’ to replace the faulty heart valves found in some congenital conditions.

Before, the only option was traumatic and risky open heart surgery. His intricate procedure feeds the replacement valve into the heart via a blood vessel in the groin. Over 100 people have benefited from this new treatment so far.

BHF Heart NurseSpecialist support

A network of specialist BHF heart nurses provide vital care and support to patients and their families across the country.

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).

What’s next?

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.


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