Sienna's story

What started like any other day for mum Jody soon became every parent’s worst nightmare.

After taking Sienna to a local park with her godmother Kaylie, fourteen-month-old Sienna became seriously unwell in her car seat —  she had suffered a sudden cardiac arrest. 

“We phoned an ambulance, and my friend performed CPR on her. I was on my knees begging, ‘Please don’t let her die. Please save her.’ ”

Thankfully, Kaylie managed to save Sienna and paramedics rushed her to hospital, where doctors discovered her heart was beating at over 315 beats per minute. 

Eventually, Sienna was diagnosed with supraventricular tachycardia (SVT), a ventricular septal defect (VSD), a heart murmur, irregular heartbeat, sick sinus syndrome and Brugada syndrome —  a rare inherited heart condition that can cause sudden cardiac death. 

Since then, she’s had both a pacemaker and an implantable cardioverter defibrillator (ICD) fitted —  a small device capable of shocking her heart back into a normal rhythm. But because Brugada syndrome can go undetected, others aren’t always so lucky. 

Searching for a way to stop sudden death

This week, around 12 people under 35 in the UK will die suddenly from undiagnosed heart conditions, like those affecting Sienna. 

Using BHF funding, Professor Elijah Behr and his team at St George’s University of London hope to improve the diagnosis of Brugada syndrome and stop the devastation it can cause. 

People with Brugada syndrome have an abnormal heart rhythm detected on an electrocardiogram (ECG), but in people with a hidden form of Brugada syndrome – this abnormal rhythm does not show. 

To find out what causes this, the team have recruited over 1000 volunteers for their study —  some with Brugada syndrome, some without —  and are analysing their DNA and heart structure to see whether these factors have an impact on the results of their electrocardiograms.