My tough little cookie needs a NEW miracle: Mother’s fears as five-year-old daughter born with heart outside body faces more pioneering surgery

The girl who was saved by doctors after she was born with her heart outside her chest is now facing more breakthrough treatment – as her family are preparing for their ‘little miracle’ to go back into hospital.

Vanellope Wilkins was allowed home from hospital for the first time five years ago after the world-first surgery.

She weighed just 3 lb 8oz when she was delivered at Glenfield Hospital in Leicester on November 22 2017, where a 50-strong team was on hand to conduct the difficult and unique surgery.

Doctors told her parents Naomi Findlay and Dean Wilkins, who had earlier watched scans of their unborn child playing with her own heart in the womb, to expect the worst.

But the baby – whose middle name is Hope – underwent three operations in her first three weeks and finally got to her Nottingham home nearly a year later.

Six years later, Naomi told MailOnline: ‘It’s been a bit of a rollercoaster with her. The last two years we’ve had some near misses.

‘Although she’s a tough little cookie she’s got that really tough side to her.

‘Despite these illnesses that have popped up and what we’ve had to deal with, she’s a little miracle. She is the happiest child I know. She is absolutely incredible.

‘What she’s been through and how she overcomes everything – it makes me so proud.

‘I feel truly blessed to be part of this.’

Now nearly six, Vanellope is facing another medical first – as doctors look to operate to reconstruct her chest in the hope of giving her the support she needs.

Working on the project are some of the same doctors who helped with the child’s first operation, while Great Ormond Street are also involved.

Over the last two years the little girl has been put in induced comas twice for a total of 30 days, after catching viruses.

Last Christmas in a particularly scary incident Naomi had to resuscitate her after she collapsed at home.

She needs 24 hour support with specialist carers, while she has autism, ADHD, is non-verbal and is partially sighted. 

Naomi continued: ‘Her next journey will be quite major surgery again, which will required going back to Leicester Royal Infirmary. And she will be having some surgery that has actually never been done on a child before.

‘They’re going to be basically reconstructing her chest. There’s a lot of uncertainty on what they’re going to do and how they’re going to do it.

‘I know they have had to reach out for a little bit of guidance internationally again and for me, it will just be a matter of handing it over and hoping for the best outcome.

‘One of their biggest concerns is where the heart is – because it’s settled where it is you can’t just pick it up and move it. So they’re worrying about what impact closing the chest will have on the heart.

‘I try not to go down that route mentally. For me I have my worries, I have my anxiety about it but I also have to carry that off her siblings and the extended family as well.

‘I think the hardest thing is being back in the unknown again, like when she was born. We’re back in that unknown place. 

‘That is quite tough because when you look at her – I’m torn. Do I hand her over? Will it work? 

‘If it doesn’t work will that undo everything that she’s done?

‘If it is successful it will be totally and utterly groundbreaking and I’m hoping and praying that when the time comes it will be like when she was born and will be successful.

‘I’ve got a lot of faith in the team – I’ve got a lot of faith in Vanellope overcoming because if you look at what she’s overcome already. 

‘If she could talk she’d probably tell me the same: “Look at me now.”

‘I’m hoping there’s an improvement. She’s such an achiever – I think it will be even more tremendous to see what she is going on to achieve.

‘We’re living every day and every day is a miracle. She’s five – she shouldn’t even be here so even that is an achievement in its own right. 

Naomi says Vanellope’s father, Dean, left the family two years ago and now has no contact with his child.

Her eldest, Caleb, 14, and Jacob, 10, are fiercely protective of their little sister – while little Felicity, who is nearly three, ‘worships’ Vanellope.

A busy house, she says her parents step in and help when she has to take Vanellope to hospital. 

She added: ‘It’s quite scary. For me as their mum it’s quite frightening but I’ve tried not to say things like that, not to the kids.

‘I can’t tell them things that are so unknown because they get incredibly anxious. 

‘Felicity takes it – I wouldn’t be surprised if this one will turn out to a full time carer for Penelope! She’s very on the ball and observes everything regarding Vanellope. 

‘She’s the one who has been born into it whereas the lads have seen the traumatic side of it. There’s not many kids out there that can say I’ve seen a heart, I’ve seen it beating, I’ve seen it outside.

‘Me and Dean split a couple of years ago so it’s a different kind of journey on my own. But I think it was the best option. 

‘When it comes to Vanellope sometimes it’s been a lot to bear on one’s shoulders but I think if I didn’t manage on my own we wouldn’t be where we are now.

‘It broke my heart at the start but we’ve got through it, we’ve got where we need to be.

‘I haven’t really had a choice – I’ve had to do what I’ve had to do for them to be where they need to be.

‘There are times when I’ve sat on my bed and I’ve just cried, but sometimes that’s the way you release things, isn’t it? And you just dust yourself off and you keep going because you don’t really have a choice.’

But the amazing child is also now going to school, while she and her mum race off to the skate park to enjoy their time off together.

Amazing video shows her chuckling as she is pushed down a ramp in a daring maneuver.

And Naomi says the house is quiet now she is out of the house every morning – and her little sister races out to meet her every day when she gets home.

She said: ‘When the carers go home I get the opportunity to have a little bit of fun with her. 

‘Some of the things that we like to do are go to the skate park and burn off some energy.

‘She’s a cracking little kid. She’s at school and she’s doing really well. She’s just took to it like a duck to water.

‘She’s always got a smile on her face. She brings a lot of life to the house.

‘I struggled a bit when she first started school because my house was just dead! To see her stomping around as she does and slamming the doors and turning my light switches on and off like she does.

‘Not to hear that for a few hours – I feel a bit strange her not being here! I am very very very proud.

‘And I’m very proud of the other children as well, and how they’ve handled things. They’re protective big brothers and are constantly watching over her.

‘And then you’ve got Felicity who has no filter when it comes to her sister! She calls her MeeMoo and she worships the ground she walks on.

‘She struggled at first with her going to school – she cried every morning. We say goodbye to her on the school bus and then when she’s coming home she’ll quickly get her shoes on and go running out down the drive!’

When Vanellope was born, her heart was covered by protective plastic and her chest opened to make room for the organ, which naturally sank into her body over two weeks.

Then a protective mesh shield was installed over the heart and the cavity covered with a skin graft.

Named after the feisty protagonist in Wreck it Ralph, Vanellope had the extremely rare condition ectopia cordis, underwent three operations in her first three weeks.

Naomi said: ‘I think she’s incredibly lucky. We all are to have the NHS in general. If you’ve been behind the scenes and witnessed firsthand their work on my child.

‘I think we’d be incredibly lost without the service they provide. She’s still the first in the UK to survive.

‘Vanellope is paving the way for the next child or children no matter how long that takes – she’s the one who in a way has been writing the book for the next one.

‘She’s a miracle. I feel very blessed to be able to call her my little girl. 

‘Looking at her and what she’s been through she’s changed my perspective on life. She’s taught me such a lot about – not what life is about – but what matters.

‘To do what she has done with a smile on her face it is such a joy.’