Olivia describes it simply: “I was basically made the wrong way. Things aren’t in the right place in my heart. I was all mixed up.”

In 2025 when Olivia was 49 a consultant told her that her heart was “like a jigsaw” due to a congenital defect that carried the very real risk of Sudden Death Syndrome with even minor exertion.

Originally from Dublin but living in Ballaghmore, Co Laois for the past two years, Olivia had none of the classic warning signs. “They were very surprised I had no chest pain. I never did.” she says. But over the preceding years her health had started to deteriorate. “I was out of breath probably, if I look back, from about 2017 on and off, and I put it down to menopause, needing to lose weight, being busy. In hindsight it was nothing to do with that.”

Her father’s diagnosis with heart failure in September 2024 prompted her to investigate her own worsening symptoms more seriously. She had developed swelling on her left side, high blood pressure, “terrible headaches… I couldn’t drive the car” and extreme fatigue. She insisted on more checks including an echo cardiogram and ECG which revealed nothing out of the ordinary. “But the stress test was a bit off. I had to keep stopping because my blood pressure went really high, my heart rate was high, and I was struggling to breathe. That had always been the way with stress tests, only getting progressively worse over the years. But I’d always tell myself the same things: weight, menopause, the usual excuses”.

While doctors weren’t concerned at the time, the swelling continued, so in early 2025 her consultant ordered a CT angiogram and “that’s when they discovered something was really wrong”. The scan had found a rare congenital defect called an ‘Anomalous origin of RCA from left coronary cusp’ which she had unknowingly lived with since birth. She had another angiogram in July 2025 which confirmed the diagnosis and surgery the very next day. “The doctors said there was a risk of sudden cardiac death, and they said they didn’t know how I’d got to that point without it being picked up”.

Olivia was terrified at the prospect of surgery and recovery was tough, but the team were brilliant. “The worst part of it was when I woke up in ICU with the ventilator in my throat. But the nurses gave me huge reassurance. They made me feel really safe”. Olivia spent ten days in hospital, five of which were spent in the ICU. “Once I got home, I settled well, though the journey home was nervewracking. They had me padded in the car like I was in a balloon with cushions everywhere. We had a defibrillator in the back of the car, so that helped me feel relaxed”.

Olivia was referred for Cardiac rehab in her local hospital which she found “excellent and has helped my breathlessness. They taught me how to breathe properly, how to lean into my body, how to use proper breaths. Things I never would have known myself”. Just before cardiac rehab had started Olivia was out and “got a pain and a crushing feeling in my chest”. She went directly to the hospital and was reassured that all was well but a Holter monitor later revealed that she had “29 episodes of arrhythmia I didn’t realise were happening, the same thing my dad has, so that’s still being investigated”.

Her diagnosis has caused her to reassess her family’s heart health. “My grandmother died at 66 with angina. My dad has had a stroke, heart attack and is living with heart failure, but they haven’t picked this defect up with him. He had a cardiac MRI the day after my surgery and he’s clear.”

While her condition is extremely rare, Olivia is getting her five children screened. “I’m a bit nervous, I suppose, because it has to be somewhere in the family, but we don’t know where yet.” Two are already clear. Her youngest who is nearly 14 is next. Until then she has paused his sports activities including basketball and boxing.

After her diagnosis Olivia went into “research mode” where she came across the Irish Heart Foundation. “Medics are great, but they didn’t have the time to be answering all my questions,” she says. She called the foundations Nurse Support Line for advice and sent her diagnosis to the cardiac nurse as she “didn’t understand any of it at the time. The nurses were brilliant” and helped her to understand her condition.

They referred her to one of the Irish Heart Foundations Patient Champions for peer-to peer support which was “amazing. I felt very isolated, even though I wasn’t. People can be around you, but if they haven’t been through it, they don’t really get it. I wouldn’t have gotten through it all without the support”. Launched in March 2023, the Irish Heart Foundation Patient Champions programme was developed to help train and support heart and stroke patients across Ireland on the most effective ways to make real and positive change happen.

Olivia is now doing well “though the breathlessness comes and goes and I get tired”. She is busy studying for her degree in psychotherapy and hopes to help others going through similar experiences. In addition, she is actively advocating for women’s heart health. “Women get pigeonholed far too easily, especially around menopause, and we start to pigeonhole ourselves too,” she says. “Something needs to change.”

She has strengthened her relationship with the Irish Heart Foundation and recently graduated as a Patient Champion. “I loved it. The experience has been amazing. I’ve met great friends there. I know I can lean on anyone in the group.”

Her advice for others is simple “If something doesn’t feel right, push. Ask the questions. Don’t let yourself be ignored.”