Abigail Louise, a 36-year-old mother of two from London, was diagnosed with Ebstein's anomaly—a rare congenital heart defect—after years of being told her symptoms were due to anxiety and panic attacks. The condition, which affects approximately 40,000 people worldwide, required lifesaving surgery in May 2026.
Years of Misdiagnosis
Between 2021 and 2025, Louise visited her GP numerous times with symptoms including breathlessness, fatigue, weight gain, and vomiting. She was referred to therapy 'five or six' times after doctors attributed her issues to anxiety. In 2021, while celebrating her birthday, she experienced a "weird heart rhythm" and red marks on her leg, followed by shortness of breath. She called an ambulance and was taken to A&E, where she was told she had a panic attack, despite a scan showing right bundle branch block (RBBB)—a condition where electrical impulses in the heart are delayed or blocked.
Louise recalled telling doctors, "I said, 'but no, I didn't, there was nothing to panic about, it doesn't fit or feel right.'" She continued to experience fatigue, faintness, and breathlessness, which impacted her gym routine. "I went back to the GP over the space of four years numerous times and said 'there's something wrong,'" she said. "They kept saying I had anxiety and I had trained my brain to think this now." Therapy providers were puzzled, telling her, "We don't understand, you're not depressed, you don't have anxiety, we don't understand why you keep being referred to us."
Discovery and Diagnosis
In December 2024, Louise attended her local hospital's A&E after being unable to climb a flight of stairs at work and experiencing "shooting" chest pain. Tests revealed RBBB and a suspected heart murmur. She was referred to specialists who, after a 24-hour electrocardiogram and echocardiogram, found a leaking heart valve. Further referral to Royal Brompton Hospital in London confirmed Ebstein's anomaly, a malformed tricuspid valve that affects blood flow between the heart's chambers, leading to improper closure and blood leaking back into the upper chambers.
Louise said, "I don't know how I got to 36 without it being found. I don't know how I went through two pregnancies without it being found. It's so rare they (doctors) can't figure out if it's completely random or hereditary." She noted that most of the 40,000 people with the condition are babies.
Surgery and Recovery
Before surgery, Louise lost 10kg to lower the risk, as her surgeon was concerned about her weight. On May 29, 2026, she underwent a nine-hour cone procedure—where surgeons reconstructed her tricuspid valve using her own tissue—performed by a surgeon who had completed his 50th such operation. The surgery was longer than expected, and Louise developed pneumonia and both lungs collapsed due to the bypass. She also experienced complete heart block, but her heart eventually regained a normal rhythm.
Louise spent four weeks in hospital and was discharged in mid-June. Now nine weeks post-op, she is set to undergo 12 weeks of cardiac rehab starting at the end of August. She said, "I'm nine weeks post-op now. I'm doing really well, everything has recovered." She remains optimistic about her recovery, stating, "I don't know where I'm going to go in recovery, whether I'll make a full recovery and be doing cartwheels again or have a slower pace of life. But I'm optimistic it will be good either way because two years ago I didn't know if I'd even be here."
Louise's NHS trust has been contacted for comment.
