Vanellope Hope Wilkins, baby born with heart outside body, first in UK to survive

A baby born with her heart outside the body has survived, a first for UK medicine.

Vanellope Hope Wilkins was due to be born around Christmas, however discovery of the rare condition meant doctors delivered her prematurely by caesarean section on November 22 at Glenfield Hospital in Leicester.

The condition, ectopia cordis, was revealed by a nine-week scan, which showed the baby's heart and part of her stomach growing on the outside of her body.

Doctors initially told her parents, Naomi Findlay and Dean Wilkins, of Bulwell, Nottinghamshire, that "termination" was the only option as there was no known case in the UK where a baby born with the condition had survived.

"I burst into tears. When we did the research we just couldn't physically look because the condition came with so many problems,” said Findlay.

"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."

Vanellope needed three operations to survive, undergoing the first when she was less than an hour old. This involved inserting special lines into the blood vessels of her umbilical chord to support her heart.

A week later, her chest was opened up to create more space for the heart to fit back in.

Then, surgeons took skin from under her arms to create a join in the middle of her body. The heart was protected by a mesh, 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.

Old estimates show 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.

Speaking about the moments after the birth, Findlay 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."

Wilkins, who works as a builder, said: "We still didn't know what we were looking at when we saw the scan, it looked like a little hamster with a hat on. We were told that our best bet was to terminate and my whole world just fell to bits."

The 43-year-old father-of-three said the couple were told the first 10 minutes after birth were crucial.

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

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."

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."