'I saw my baby's heart out of her chest'

Vanellope was born with ectopia cordis, which meant her heart was outside of her body

This week a children's heart unit, which once faced closure, secured its future by permanently moving location.

The East Midlands Congenital Heart Centre, based at Glenfield Hospital, moved about three miles down the road to the Leicester Royal Infirmary (LRI).

The centre first faced the prospect of closure in 2012, and its future was only guaranteed after NHS England reversed its decision in late 2017.

We spoke to some of the parents whose children have received life-saving care at the unit to hear their remarkable stories and get their feelings on it finding a new home.

'My daughter was born with her heart outside her body'

Vanellope was delivered by Caesarean section at Glenfield

When Naomi Findlay found out she was nine-and-a-half weeks' pregnant in 2017, it was an unexpected surprise.

But after having a dating scan Naomi, who is now 35, found out her daughter had an extremely rare condition that only affects one in eight million babies.

She said: "I was told my child Vanellope was going to be born with ectopia cordis, which meant her heart was outside of her body."

At the time, doctors said no child in the UK had survived the condition.

Vanellope was delivered by Caesarean section at Glenfield Hospital and over the course of three weeks surgeons worked to get Vanellope's heart back into her chest.

Vanellope is now four, and her mother Naomi Findlay said staff at Glenfield Hospital "paved the way for where Vanellope is today"

"It was an absolute miracle," says Naomi.

"Vanellope's a bit of a miracle in her own right, she's the first baby in the UK to survive this condition.

"I saw her heart out [of her chest], and then three weeks later her heart was back in her chest.

"How they performed that surgery, and the team around her, was incredible.

"They paved the way for where Vanellope is today, with the surgeries and their exceptional care."

Ms Findlay, who is based in Nottingham, will return to the heart centre's new site at the LRI in the coming years for a number of surgeries to give Vanellope a sternum, which she was born without.

"It's great that they can expand their work and continue saving these children's lives, which is exactly what they did with mine," she says.

'Her heart was going at 280 beats a minute'

Emma Anderton's daughter Evelyn became seriously ill at 17 months old, and was taken to Glenfield by ambulance from Leicester Royal Infirmary

When Emma Anderton's daughter Evelyn was born, she was her miracle baby.

The 39-year-old said: "It was a struggle as we had her through IVF, and we lost her twin during the pregnancy.

"It was really stressful. But we're so grateful."

Then when Evelyn was 17 months old, the unthinkable happened.

"Back in September last year we had a bit of a freak event, where she was quite clearly unwell, but we weren't quite sure what the problem was," says Emma, from Mountsorrel in Leicestershire.

"She was taken by ambulance to A&E at the LRI and her heart rate had shot up to 280 beats a minute."

Evelyn was transferred to Glenfield by ambulance and was immediately taken to the paediatric intensive care unit (PICU), where she was eventually diagnosed with Brugada syndrome.

Evelyn is almost two and "isn't afraid of anything", her mum Emma says

The condition affects the electrical signals that go to the heart, and is hard to diagnose.

The surgeons said the toddler would need an internal defibrillator.

"They were all absolutely incredible," says Emma.

"It was the scariest thing knowingly putting our daughter through the surgery during Covid times.

"But the care we received was absolutely wonderful.

"Without a doubt the staff at Glenfield saved her life.

"To think that there might've been nothing local to us, and our nearest centre could've been Birmingham would have been terrifying.

"We're just so lucky to have it close to us."

Evelyn's parents, Emma and John, say their whole family was looked after by the hospital

As a result of her condition Evelyn has visited the Glenfield frequently, and was the last patient to be discharged from centre before it moved to the LRI.

"It absolutely gives her a special connection with the hospital," says Emma.

"The care she's received from all the staff means she's not afraid of anything.

"That's down to the care she's received and the care me and my husband received."

She added she was pleased the cardiac centre was moving to the LRI.

"For all the care to be in one place - and no frightening ambulance transfers over to the Glenfield - is so reassuring," she says.

'His tiny heart was probably the size of a walnut'

Brodie - now nearly three years old - was born at 37 weeks

When Emily Bailey's newborn son Brodie was transferred from her local hospital in Derby to Glenfield, she said it was "the worst night of [her] life".

Brodie had been born by Caesarean section at the Royal Derby Hospital in October 2018 when Emily, from Heanor in Derbyshire, was 37 weeks' pregnant.

He weighed just 4lb 2oz and was found to have a severe coarctation - or narrowing - of the aorta, the main artery that carries blood from the heart.

"The first thing I noticed was that his feet were so blue - they were almost black," says Emily.

"He was struggling to get oxygenated blood to the bottom of his body."

Brodie was taken to the NICU (Neonatal Intensive Care Unit) and placed on a ventilator.

He was then transferred to Leicester.

The hospital kept Emma informed throughout Brodie's treatment

"It was horrible as I had to stay at the Derby Royal while I recovered from the C-section," says Emily.

"It was the worst night of my life."

But when she arrived at the hospital a few days later, she found it "amazing".

Brodie had open heart surgery at Glenfield when he was 12 days old.

"They rang me and gave me updates," says Emily.

"They talked me through everything - they were really thorough.

"They did a booklet and took pictures and showed me his whole journey. I have a whole folder I can show to him when he's older.

"I was a single mum, trying to do all this on my own and the support they gave me was immense.

"His tiny heart was probably the size of a walnut but my baby is still alive today, thank God for them."

At the age of two Brodie - pictured here with his older brother - is down to visits to the unit every six months

Brodie had further surgery at the age of one but today, about to turn three, he is down to visits every six months.

Emily says she is delighted the region has retained the unit but worries the move to the more centrally-located Leicester Royal Infirmary will affect access and parking.

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Not only did the unit save Brodie's life - it also changed Emily's.

The former retail manager has ambitions to become a nurse and has won a place to study the subject at the University of Nottingham.

"The unit is amazing and actually inspired me to become a children's nurse myself," she says.

"I will be able to say to families I really do understand what they are going through."