Amazing Annabelle is living life to the full

We met Annabelle as a baby over four years ago, when she spent the first seven months of her life in Evelina London Children’s Hospital. Now, four-year old Annabelle is enjoying her final year at nursery and living life to the full.

“If it wasn’t for Evelina London, she wouldn’t be here today – the specialist care she received was life-saving.”

Barry, Annabelle’s Dad

January 2020 – welcome, baby Annabelle

At baby Annabelle’s 20-week scan, her parents Barry and Christine were told the devastating news that she had a type of Congenital Heart Disease called Hypoplastic Left Heart Syndrome (HLHS). It’s a rare condition that only affects around one in 5,000 children. Although the couple live in South Lanarkshire in Scotland, they made the 400-mile journey to Evelina London Children’s Hospital so that Annabelle could be cared for by the specialist cardiology team.

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

“Annabelle was one of the smallest patients with HLHS that we’ve cared for at Evelina London. This means that her treatment hasn’t been typical – she’s needed more surgeries to make sure her body is getting enough blood and oxygen. As one of the only specialist hospitals in the UK that performs the surgeries needed to treat such small babies with HLHS, we’re proud to provide exceptional care for children and families,” said Hannah Bellsham-Revell, Consultant cardiologist.

Seven months of compassionate care at Evelina London

Annabelle’s condition means that the left side of her heart is smaller than normal and can’t pump enough blood around the body. She needed round-the-clock care to keep her stable and help her little body to grow stronger.

Under the expert care of her cardiology team, she had five more surgeries, including two open-heart surgeries at just three and six months old. For her parents, it was frightening time.

“It was hard – she was so vulnerable. When you have a baby, you’re meant to look after them, but this was taken away from us. She couldn’t be cuddled. We couldn’t feed her. We couldn’t be normal parents,” said Barry.

The couple stayed locally at Ronald McDonald House, which is support by Evelina London Children’s Charity to provide ‘home away from home’ accommodation for families with a child in hospital.

July 2020 – Annabelle goes home

Thanks to the incredible cardiology team, Annabelle was finally able to go home after seven months in hospital care. Since then, she’s been looked after by the Royal Hospital for Children in Glasgow, but her Evelina London family are always on hand to help.

“It was amazing to go home. And even though we’re in Scotland, the Evelina London team haven’t felt far away. Together with her Glasgow team, they help us to feel confident about her care,” shared Barry.

Annabelle’s condition means she needs regular check-ups, but she doesn’t let this hold her back from having fun. At age three and a half, she was delighted to become a big sister!

August 2023 – “superstar” Annabelle needs further care

In August 2023, Annabelle was struggling. Having HLHS means she has less oxygen in her blood than is normal, which can make her tired and breathless. For Annabelle, this meant a trip back to Evelina London. Her dedicated team would then decide if she was ready for surgery.

“Evelina London is a second home. It means that when we’ve been back, Annabelle is calm and relaxed. Everyone was happy to see her. She’s treated like a superstar!”

Barry, Annabelle’s Dad

Image of Annabelle smiling in her hospital gown

March 2024 – milestone operation for brave Annabelle

By age 4, Annabelle had been through more tests, scans and surgeries than most people have in a lifetime. Now, she was ready for the Fontan procedure – the final operation recommended for children with HLHS.

Although nerve wracking, her parents knew she was receiving outstanding care:

“Annabelle’s cardiologist, Hannah, stands out massively. She’s so dedicated to her work and has provided a lot of reassurance over the years. We trust her and we know that Annabelle is in the best hands,” said Barry.

Annabelle recovered on Sky Ward, Evelina London’s 18-bed cardiac ward, which was funded with the help of our generous supporters. For the family, the colourful artwork, child-friendly facilities, and extra space and privacy made this challenging time a little easier.

Since the operation, Annabelle has steadily got better. She loves dancing with her friends, gymnastics and soft play!

“As a Dad, seeing her now is amazing. We don’t know what’s coming, and that can be worrying. But we plan for now and let her live her life to the full. She is thriving and living her very best life,” said Barry.

Image of Annabelle and her little sister

August 2024 – Annabelle loves life as a four-year-old

Just five months on from her life-changing surgery, Annabelle has been enjoying a fun-filled summer holidays and has just started her final year of nursery.

We’re so proud to support the life-changing care at Evelina London. And we’re proud of amazing Annabelle!

“When Annabelle was born, we were told she had a 50% chance of reaching school age. This was a nightmare conversation to have. But fast forward a few years and here she is age four and excited to start her final year of nursery.”

Barry, Annabelle’s Dad

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