A mum felt the fear when her 10-day-old son rushed into action – with a tiny heart the size of a walnut.
Addison Watts, from Norwich, developed a heart defect called tetralogy of Fallot, in which blood does not flow properly, during her mother’s pregnancy.
It is one of the most common heart defects, affecting around one in 3,600 births in the UK, according to the British Heart Foundation (BHF). It causes babies to be born with a hole in the heart and a narrow pulmonary valve, and the main artery of the body grows in the wrong place.
In most cases, children at least six months of age undergo surgery to treat tetralogy of Fallot. But Edison needed open-heart surgery at less than two weeks old because there was a large hole in his heart.
Addison’s mother, Jo Watts, said Independent: It was an unknown and scary time, when they operated on his heart, it was the size of a walnut.
The 43-year-old mother of three explained that during the scan, she was told her baby had a heart problem, but they couldn’t diagnose what it was. It wasn’t until later that a specialist fetal heart scan at London’s Great Ormond Street Hospital made the diagnosis.
She added: “We have two older daughters who are heart-healthy and had normal pregnancies, so being told at the 20-week scan that there is something wrong with your baby’s heart was very overwhelming and very difficult.”
“We were always under the impression that he would need surgery at six months and at a better weight, but unfortunately that was not the case.”
He explained that the birth was normal and after five days in the hospital they were sent home. But eight days later, a neonatal nurse visited her and noticed that her oxygen saturation was extremely low – a common side effect of Tetralogy of Fallot, which means that less oxygen is being carried around the body.
Ms Watts and Addison were taken by the Children’s Acute Ambulance Service from Norfolk and Norwich University Hospital to Olina Children’s Hospital in London for emergency surgery, where surgeons “patched up the big hole in her heart,” Ms Watts explained.
Addison is now seven years old and has annual check-ups at Great Ormond Street Hospital, requiring valve replacement surgery as a teenager.
Ms Watts added: “His heart is getting stronger than a normal baby because it’s working harder.
He loves his soccer and joined a local team, but he’s at the point where he knows when to stop after a long, intense activity like half an hour of training. So there are limitations, but he’s starting to understand more now that he’s a little older.
Addison, who is a pupil at Cawston Primary School near Norwich, has been named a Young Heart Champion by the BHF in recognition of her fundraising efforts and bravery in the face of a serious heart condition.
She inspired her local school and bowling club, which her father Graham is part of, to raise more than £650 for the charity. Addison was one of a handful of children from across the UK to be honored at the BHF Young Heart Champion Awards at the Paradox Museum in Knightsbridge, London in September.
Addison said: “I wanted to help other children like me. It was really exciting to win the Young Heart Champion and I had a brilliant day at the museum.”
The award ceremony meant Addison met other young children with heart problems just like him, which was a source of reassurance – something Ms Watts appreciated when her son was diagnosed.
“I said at the hospital after he was born that if there’s another family that’s been through what we’ve been through, I’d be happy to speak up because I feel like there’s not enough support for families with this diagnosis,” she said.
Before BHF existed, most babies with severe heart defects in the UK did not survive their first birthday. Today, thanks to research, more than eight out of 10 children diagnosed survive into adulthood.
