This Congenital Heart Defect (CHD) Awareness Week, Cheryl, our Nottinghamshire Branch Lead, shares the remarkable story of her son, Ben, and the reality of living with CHD.
Ben was born on October 19, 2012, following a healthy pregnancy and birth. At just four hours old, concerns about his health began to emerge. Initially, doctors suspected a lung issue, but further investigations revealed that Ben had Transposition of the Great Arteries (TGA)—a serious congenital heart defect.
TGA is a condition where the two main blood vessels leaving the heart, the pulmonary artery and the aorta, are reversed. This means oxygen-rich blood is not circulated to the body properly, creating a life-threatening situation.
Ben required an emergency transfer to Glenfield Hospital, as his condition was critical. By the time he arrived, he had turned blue due to lack of oxygen and needed an urgent balloon septostomy—a procedure to create a hole in the heart, allowing oxygenated and non-oxygenated blood to mix.
At just five days old, Ben suffered a seizure, resulting in brain damage. Doctors warned that he might never walk or talk. Despite this, his family focused on his recovery, determined to get him strong enough for the next step: open-heart surgery.
At just three weeks old, Ben underwent an eight-hour open-heart surgery, performed by Mr. Lotto and his team. After nearly two weeks in the Paediatric Intensive Care Unit, Ben was finally strong enough to go home where he proceeded to thrive.
By age two and a half, Ben was diagnosed with autism, sensory processing disorder, hypermobility, and other conditions. Though he is non-verbal, he is full of joy, energy, and resilience.
At age four, Ben started attending a specialist school, and today, at age 12, he loves participating in Little Miracles sessions where his mum, Cheryl, leads the Nottinghamshire branch.
Despite ongoing regular heart check-ups for a leaky valve, a narrowed artery, and a heart murmur, Ben continues to thrive, proving every day that challenges do not define his incredible spirit.
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