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Baby born with heart outside body survives in UK

Vanellope Hope Wilkins' heart and part of her stomach formed on the outside of her body
Vanellope Hope Wilkins' heart and part of her stomach formed on the outside of her body

A baby born with an extremely rare condition in which the heart grows on the outside of the body has survived in the UK.

Vanellope Hope Wilkins was due to be delivered on Christmas Eve before a rare condition meant she had to be born prematurely by caesarean section on 22 November at Glenfield Hospital in Leicester.

The condition, ectopia cordis, which was discovered during a scan at nine weeks, showed the baby's heart and part of her stomach were growing on the outside of her body.

She needed three operations to survive.

Immediately following her birth she was wrapped in a sterile plastic bag and then senior neonatal specialists inserted a breathing tube and drips, and then anaesthetised her.

The first operation involved special lines which were inserted into the blood vessels in her umbilical cord to give fluids and medications to support her heart, and to monitor her blood pressure accurately.

After seven days in the Paediatric Intensive Care Unit, medics decided they could conduct the second operation, which was to open her chest a bit more so they could create more space for the heart to fit back in.

Over a period of around two weeks, the heart naturally made its way back into the chest due to gravity.

This allowed staff to carry out the final operation, which involved taking skin from under her arms and moving it round to join in the middle of her body.

Surgeons had created a mesh that protected the heart as she did not have ribs or a sternum.

As her organs fight for space inside her chest, Vanellope is still attached to a ventilator.

Her parents, Naomi Findlay and Dean Wilkins, of Bulwell, Nottinghamshire, said the first scans led doctors to tell them that "termination" was the only option.

Experts, including a consultant cardiologist, have said that they do not know of a case in the UK where a baby has survived such a condition.

Speaking of when she first found out about the condition, mother-of-two Naomi said: "I burst into tears. When we did the research we just couldn't physically look because the condition came with so many problems.

"All the way through it, it was 'the chances of survival are next to none, the only option is to terminate, we can offer counselling' and things like that.

"In the end I just said that termination is not an option for me, if it was to happen naturally then so be it."

Frances Bu'Lock, the consultant paediatric cardiologist at Glenfield Hospital, said she described the chances of the baby surviving as "remote".

She said: "I had seen one in foetal life around 20 years ago but that pregnancy was ended.

"I did a quick Google search, as everyone does, and then more of a literature search but that didn't inform me an awful lot because there's not much to go on and the cases are all very different."

Explaining what it felt like after the birth, Naomi said: "I started to panic, I actually felt physically sick because I actually thought there was a big possibility I wouldn't be able to see her or hear her or anything really.

"But when she came out and she came out crying that was it, the relief fell out of me."

Describing her emotions almost three weeks after Vanellope was born, Naomi said: "I just want to climb into her cot and take her place, just to let her breathe a little bit."

The couple said the baby was named after a character in the Disney film, Wreck It Ralph.

Naomi said: "Vanellope in the film is so stubborn and she turns into a princess at the end so it was so fitting."