Baby becomes first in Britain to survive being born with heart outside body

A baby may be the first in the UK to survive being born with her heart outside of her body.

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

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

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

They feared the worst for Vanellope (Picture: PA)

But were moved to tears when they heard her crying (Picture: PA)

Her mother, mother-of-two Naomi Findlay, said that when she first found out about the condition she ‘burst into tears’.

Explaining what it felt like after the birth, the 31-year-old 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.’

Vanellope is named after a character from Wreck It Ralph (Picture: PA)

Vanellope’s father Dean Wilkins, a 43-year-old builder, said they were told that the first 10 minutes after birth were crucial.

‘What they said is, when the baby is born she has got to be able to breathe in our oxygen,’ he said. ‘Twenty minutes went by and she was still shouting her head off – it made us so joyful and teary.’

Vanellope underwent her first operations when she was less than an hour old.

A team of around 50 staff got together from around 8am with specialised equipment, before a theatre briefing at 8.30am.

Naomi was wheeled into theatre just after 9am, and was met by four main teams of doctors, midwives, nurses and allied health professionals.

At 9.50am Vanellope was born, and immediately wrapped in a sterile plastic bag.

The baby was then taken into an adjoining anaesthetic room where 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.

She had to undergo surgery in her first hour of life (Picture: PA)

Consultant neonatologist Jonathan Cusack said: ‘At around 50 minutes of age, it was felt that Vanellope was stable enough to be transferred back to the main theatre where she had been born to the waiting anaesthetists, congenital heart disease and paediatric surgical teams who began the task of putting her entire heart back inside her chest.’

Vanellope was transferred to the Paediatric Intensive Care Unit at 1.35pm where she is due to stay for at least several weeks, while she gets strong enough and big enough for her heart to be placed fully within her chest and covered in her own skin.

After seven days, 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.

In the average baby, there is an indent on the left lung which creates space for the heart – but Vanellope did not have this.

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 which 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 ventilation machine.

The couple said they named the baby 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.’

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Old estimates show that five to eight babies per million are born with ectopia cordis and serious congenital malformation in which the heart is abnormally located either partially or totally outside of the chest.

Babies born with the condition generally have less than a 10% chance of survival, depending on the risks of other conditions as well as the ability to place the baby’s heart safely in the chest.

East Midlands Congenital Heart Centre lead surgeon Branko Mimic said: ‘Cases such as Vanellope’s, where everything else appears essentially normal, are even rarer, and whilst therefore it would seem more hopeful she will do well, it is therefore almost impossible to be confident of this.’