Schoolgirl born with heart defect honoured with living memorial bench

A six-year-old girl born with a serious heart condition is being celebrated with a living memorial bench on the grounds of her school.

Annabelle Main was born with hypoplastic left heart syndrome, which can be fatal without early intervention.

But she defied the odds to start primary one at Law Primary in Carluke last August – marked by a special red bench unveiled in her honour, one of 65 being installed by the British Heart Foundation.

Annabelle has had a remarkable journey since being born with the rare condition in 2020.

Her dad, Barry Main, said the condition was first discovered during a 20-week scan, when they were faced with the difficult decision of whether to continue the pregnancy.

“We were told she had a 57% chance of ever reaching school,” he told STV News.

“It was heartbreaking. We didn’t know how to process it.

“But we knew straight away we wanted her to go through surgeries and give her the best chance.”

Hypoplastic left heart syndrome is a rare condition that only affects around one in 5,000 children.

The condition means that the left side of the heart is smaller than normal and can’t pump enough blood around the body.

The family later learned Annabelle’s condition could not be treated in Scotland, with care instead provided at Evelina Children’s Hospital in London.

As first-time parents, Christine and Barry were faced with relocating for several months around the birth, with the possibility of being away from home for up to seven months. At one stage, they considered selling their home to cover the costs.

But support from the Ronald McDonald House allowed them to stay near the hospital, meaning they did not have to give up their home.

Annabelle was born weighing just 1.82kg and was too small to undergo her first major surgery immediately.

For tiny newborn Annabelle, her condition meant she needed her first heart surgery at four days old, weighing just 4lbs.

Annabelle underwent several surgeries in her first months of life STV News

After she had built up more strength, she had five more surgeries, including two open-heart surgeries at just three and six months old.

Entrusting their baby girl’s life to doctors was one of the toughest aspects of their journey.

“We had to hand her over to anaesthetists. We were always signing paperwork that warns the end of surgery could result in death. Nine or ten forms in total – every one of them ended with that.

“It’s hard to sign that and hand her over, knowing there’s a chance you might not get her back.”

The arrival of the Covid pandemic added further strain, with both parents unable to be with Annabelle at the same time.

“No family could come and see her. Christine and I were not allowed in at the same time.

“We were going through these life-changing surgeries, and we had to be apart.”

Finally, at seven months old, Annabelle was able to go home to Carluke. Since then, she’s been looked after by the Royal Hospital for Children in Glasgow.

Annabelle was given a 57% chance of ever starting school STV News

Last year, ahead of her final surgery at the age of five, Barry said they began to be more open with Annabelle about her condition and ongoing hospital care.

“It was daunting. She was more aware of what was happening as she wasn’t just a baby anymore. She really didn’t enjoy the hospital.

“Once we knew she was fine after that surgery, every day now is more precious than it was before.”

Barry and Christine watched with pride as Annabelle started school alongside her nursery friends last summer – a milestone they once feared she might never reach.

“It was amazing – we didn’t know if we were going to get there or not,” Barry said.

“She takes everything in her stride; you wouldn’t know anything was wrong with her.”

Annabelle has thrown herself into school life. Her favourite lesson is drama, where she dances and sings Disney songs with her classmates.

Annabelle, with family and teachers as her living memorial bench was unveiled BHF

Although Annabelle has lower oxygen saturation levels, which can affect her ability to take part in some physical activities, her dad says it doesn’t hold her back.

She enjoys gymnastics, cheerleading and going to Rainbows and is also learning Spanish.

“She’s got a full social life outside of school – she never lets anything stop her.

“She’s been through more in six years than most people go through in multiple lifetimes. She’s very determined.”

Before the 1960s, most babies born with a severe congenital heart defect in the UK didn’t live to see their first birthday.

Today, the picture has changed dramatically following decades of research, with more than four out of five babies diagnosed with a congenital heart defect in the UK now surviving to adulthood.

David McColgan, Head of BHF Scotland said: “Annabelle’s story shows the true reality of living with cardiovascular disease, and we are so grateful that she is courageously sharing her experiences to help others.

“Despite being one of the UK’s biggest killers, our new findings show cardiovascular disease is still misunderstood or not taken seriously – and that those living with it face judgement and challenges.

“By sharing the stories of people who live with cardiovascular disease on our iconic red benches across the UK, we hope to start more conversations that change dangerous misconceptions. Research will help us save and improve more lives, but the only way we can fund the scientific breakthroughs of tomorrow is thanks to the public’s generous donations.”