Predicting the future for adults who were born with congenital heart disease

More children than ever before are surviving with congenital heart disease — but then what?

Before the BHF was set up, only one in five babies born with congenital heart disease made it to their first birthday. Today, more than 8 in ten people born with a heart condition survive in to adulthood.

But what happens to these adults? Until relatively recently, Grown Up Congenital Heart Disease (GUCH) was a whole new type of medicine because most children simply didn’t survive to become ‘grown up’. Professor Jane Somerville coined this term after identifying the need for care for adolescent and adult survivors of congenital heart disease. With BHF funding she spearheaded a patient association for them.

Survival as a baby is just the start

Adults with congenital heart disease are now outnumbering babies born with congenital heart disease — and these adults are sadly more likely to die. Dr Sonya Babu-Narayan works with these adults who were born with congenital heart disease — many of them have had their lives saved through multiple invasive procedures. She combines her work as a consultant cardiologist and world-class researcher with her appointment as the newest BHF Associate Medical Director.

Doctor Babu-Narayan with her patient Sarah Howell

The major long -term effects of being born with an abnormality in the heart can include an early risk of heart failure and heart rhythm disorders. Dr Babu-Narayan and her team want to understand these risks better, so doctors can give personalised advice and tailor lifelong treatment for everyone born with congenital heart disease.

Failing hearts. But not as we know them.

The leading cause of death in those born with congenital heart disease is premature heart failure. But this heart failure is not like the slow and steady, somewhat predictable, decline of heart failure that most cardiologists are familiar with — premature heart failure can progress suddenly, in big steps and be difficult to anticipate. Sonya wants to understand more about how hearts develop this kind of heart failure so that she can apply the research to the care of her many patients. One of her projects uses high-tech heart scanning technology to study the detailed structure of heart muscle in these adults. This MRI technique is non-invasive and gives in-depth information about the structure of heart muscle cells and how their movement is coordinated as the heart squeezes and relaxes to pump blood around the body. The team will combine this information with traditional ways of measuring someone’s risk of heart failure, including blood tests and heart ultrasound.

A heart after repair of a congenital heart defect seen by Diffusion Tensor Cardiac Magnetic Resonance Imaging (DT-CMR) — the only way to see detailed heart microstructure in a living person.

The team hope that their research could help us to identify which adults born with congenital heart disease are most likely to develop heart failure, before they even start to experience symptoms. By finding these people before it’s too late, we can do more to limit their risks, so they can grow old with a healthy heart.

Finding the beat

The abnormal heart rhythms experienced by adults who were born with congenital heart disease also put them at risk of sudden death. Predicting the development of these abnormalities is vital to save lives but it is very difficult.

The same imaging technique (MRI) that Sonya’s team use for studying heart failure can also be used to find and analyse heart scarring called fibrosis. This can develop after childhood surgery and interventions to repair their hearts, or as a consequence of other types of heart damage. They want to find out if the presence, extent and location of the heart scarring can be used to predict future heart problems, and if this knowledge can guide a treatment called ‘ablation’ or help decide which person would benefit from a defibrillator Ablation is when heart rhythm disorders are treated by destroying the part of the heart responsible for the faulty rhythm, often with a laser.

Research and innovation, including by former BHF Professor Sir Magdi Yacoub, might be the reason that children born with congenital heart disease survive in to adulthood but that’s not the end of the story for us.

We are determined to fund life-saving and live-changing research like Sonya’s to keep hearts pumping and blood flowing, for as long as possible.

See how Dr Babu-Narayan’s work, and that of other pioneering women, has contributed to groundbreaking research into heart and circulatory diseases:

Women in science: A timeline

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And you can follow the BHF publication on Medium to stay up-to-date on groundbreaking research.

Predicting the future for adults who were born with congenital heart disease was originally published in British Heart Foundation on Medium, where people are continuing the conversation by highlighting and responding to this story.

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