Esme Bowen's heart was stopped for 94 minutes during open-heart surgery when she was seven months old. Now five, she is thriving, and her family has raised £37,000 for the British Heart Foundation.
Warning signs and diagnosis
Emily Bowen, 33, a dog groomer from Swansea, felt something was off during her first pregnancy. Her unborn daughter, Esme, was small, and an early scan detected an irregular heartbeat. Esme was born on New Year's Day 2021 during Covid, following a normal labour. Initial heart checks were fine, but a week later she became seriously ill, vomiting and breathing rapidly, with her heart racing visibly.
An out-of-hours doctor sent them straight to hospital. Emily went in alone due to Covid restrictions, ten days postpartum and still unwell. At Swansea Morriston Hospital, an echocardiogram revealed a significant hole in Esme's heart, an atrioventricular septal defect (AVSD). Esme was in heart failure and needed open-heart surgery but was too small to undergo the operation safely.
Six months of waiting
Fitted with a nasogastric feeding tube, Esme spent six months gaining weight while Emily and her partner Mathew monitored her constantly. Emily recalled thinking of Esme's tiny heart, the size of a walnut, and the family barely left the house for six months. Four operations were booked and postponed before Professor Massimo Caputo, a British Heart Foundation-funded researcher and cardiothoracic consultant, was able to operate at the University Hospital, Bristol, in July 2021.
During the seven-hour operation, Esme's heart was stopped for 94 minutes while machines kept her alive. At 4pm, the couple were told they could see their daughter. The surgery had been uneventful, and Esme was discharged after a week. The family celebrated with coffee and French toast.
Fundraising and recognition
Today, Esme lives with asymptomatic heart failure, remains on medication, and will eventually need further surgery. Her parents are determined she should enjoy life to the full. The family began fundraising, with Mathew completing marathons, Emily running the Cardiff Half Marathon, and Esme joining sponsored bike rides. Together, they raised £37,000 for the British Heart Foundation and related causes, earning the charity's Outstanding Contribution Award and a nomination for the People's Choice Award, partnered by Metro.
This month, the couple flew to Las Vegas to marry, with Esme at the heart of their celebrations. Emily said, 'We're so lucky she's still here. We're just so proud of her.'
