More support call for girl born with heart outside body

The mother of a girl who made medical history twice after being born with her heart outside of her body has called for more support to care for her daughter at home.

Vanellope Hope Wilkins had three operations to place her heart back inside her chest after birth in 2017. Then last year, aged seven, underwent further groundbreaking surgery to reconstruct a protective cage around her heart.

Mother Naomi Findlay said Vanellope was doing well physically but continued to have complex medical and behavioural needs and needed more care support.

The NHS Nottingham and Nottinghamshire Integrated Care Board (ICB), which provides care for Vanellope, said it "regularly reviews packages of care".

Vanellope, now aged eight, is under the care of a neurology team, has epilepsy, is partially sighted, has attention deficit hyperactivity disorder (ADHD), autism and is non-verbal.

She has a care package with one-to-one carers assigned most of the day and every night.

Naomi, 40, from Clifton in Nottingham, said despite this, she struggled to deliver the "quality care" her daughter needed and she could never be left unattended.

She said as Vanellope gets older and stronger, her behaviour was becoming "more challenging".

Naomi said she believed Vanellope now needed two carers during the day and added she needed more support to ensure she could keep her safe at home.

"I'm not superhuman," she said.

"To be able to cut myself up into four, and be equal in my parenting to all four of my children, is becoming much more difficult."

Naomi said she was "not prepared" to put her daughter in full-time residential care.

"Because if that happened, I've failed in everything.

"I need the extra support. I need it in order for her to remain safe at home," she said.

Vanellope was given less than a 10% chance of survival when she was born in 2017 at Leicester's Glenfield Hospital.

There is no known other case in the UK where a baby has survived after being born with their heart outside their chest - an extremely rare condition called ectopia cordis.

Although surgeons managed to place her heart back inside her body, it was covered by just a thin layer of skin and with no breastbone, Vanellope had to wear a hard chest brace at all times to protect her heart.

After "a lot of brainstorming", the same surgeons who operated on Vanellope as a baby came up with an idea to create a protective cage around her heart using her ribs.

The surgery took place at the East Midlands congenital heart centre at Leicester Royal Infirmary in April 2025.

Consultant paediatric surgeon Ikenna Omeje said medical staff "had to think a lot on our feet" because a similar operation had never been performed before.

"It shows when we all come together as a team we can move mountains," he said.

Naomi said: "Her resilience through it all, to go through what she has, and endure what she has, with a smile on her face, has taught me a lot."

She added: "I don't think there's enough words to actually describe how I feel.

"It's incredible the work they've done, the planning, the execution and then seeing her now, it's remarkable.

"From seeing a little girl that is one-of-a-kind, for them to pull a plan like that together is honestly exceptional, it really is."

A few weeks after the operation, Vanellope was able to take off her protective chest brace and should not need further heart surgery.

Consultant paediatric surgeon Nitin Patwardhan, who has been involved in all of Vanellope's care since birth, said it was rewarding to see her doing so well after such a complex operation.

He said: "That gives you immense satisfaction - that what you thought logically would work, actually worked. It doesn't happen all the time, medical science is not always exact."

The ICB, which provides healthcare for Vanellope, said it "regularly reviews packages of care" and tailored support was provided after an assessment was carried out.

Rosa Waddingham, director of quality (nursing), said: "This process is always done together with the family and social care.

"It is led by the child's healthcare needs, not by a set budget."

Nottingham City Council, which provides an additional 30-hour social care package to Vanellope, said it could not comment on individual cases, but added it "works closely with families and partners to ensure that children with additional needs receive the support that is appropriate to their assessed needs".

"All care packages are regularly reviewed and tailored to the individual circumstances of the child and their family, taking into account professional assessments and any changes in need.

"Our priority is always to support children to remain safely at home wherever possible, with the right level of care and support in place," a council spokesperson added.

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