Caroline's inherited heart condition


"I may have passed on a faulty gene to my unborn baby that could take her life"

"I inherited a faulty gene from my dad that could cause my heart to stop at any moment."

Passing a heart condition to a newborn

"We found out after he was rushed to hospital in an ambulance because his heart had gone into a dangerous rhythm that can lead to cardiac arrest. It was terrifying."

"I remember saying to my then fiancé, Rob, “If you don’t want to get married, I will understand.”

We are now expecting our first baby. It is such an exciting time, but there is the fear of knowing there is a 50/50 chance that our baby girl will inherit my faulty gene.

"Although I have no symptoms at the moment, it still affects every part of my life – even going for a swim could be life-threatening for me.

Preventing heart problems

"My faulty gene can cause a condition called ARVC, that can lead to permanent damage to the heart muscle.  If my baby has it, she could be affected from the day she’s born. And it could take her life away. But at least knowing she is at risk means we can protect her. Other families aren’t so lucky.”

Caroline’s unborn baby is the star of our Fight for Every Heartbeat campaign. Watch the Baby behind the Baby film, below to learn more.

What is ARVC?

Arrhythmogenic right ventricular cardiomyopathy (ARVC) is a rare disease of the heart muscle. It's an inherited condition passed through families caused by a change in mutation in one or more genes. ARVC is not curable, but most symptoms can be controlled using medicines. Early detection is critical.

Other people with cardiomyopathy

There are multiple forms of cardiomyopathy, many of them congenital. Here are stories of others fighting for every heartbeat:

Helen's ARVC
Deb's cardiomyopathy
Althea's dilated cardiomyopathy

Support life saving heart research

Researchers Bill McKenna and BHF Professor Hugh Watkins have paved the way in discovering the genetic mutations that cause one of the most common cardiomyopathies and led to a successful pilot of a genetic screening with the NHS that is now being used across the UK.

With your help, we can ensure that more people like Caroline discover the genetic causes of potential heart problems before their conditions worsen. Donate to contribute to the research we're doing into detecting these problems.