50-strong team helped baby with heart outside body survive against the odds

Doctors have described how dozens of specialists worked together to help a baby who became the first in the UK to survive after being born with its heart outside its chest.

Vanellope Hope Wilkins was due to be born on Christmas Eve, but the condition, ectopia cordis, meant she had to be delivered on 22 November at Glenfield Hospital in Leicester.

Vanellope's parents, Naomi Findlay and Dean Wilkins, said doctors had told them termination was their only option, with experts saying they had not seen a case in the UK where a baby had survived.

The consultant who carried out the surgery told Sky News that Britain sees less than one case a year and most never make it to delivery.

Paediatric cardiologist Frances Bu'Lock said a huge team had to be assembled to ensure success.

"We had to do a lot of planning around the delivery, once it was clear that she was going to survive to be able to be born," said Dr Bu'Lock.

"We had to assemble teams of obstetric doctors, neo-natal doctors, anaesthetists, cardiac surgeons, because they have expertise in this area - get them all up to the operating theatre in Glenfield and deliver Naomi, and… get baby Vanellope out; we had to deliver her early - and then start to think about getting the heart covered.

"It's been quite a bit of logistic planning."

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The first stage was just making sure she survived the birth and a team of around 50 worked on the separate complex procedures.

Vanellope was delivered by caesarean section and then whisked away for more detailed surgery.

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."

It took around four hours to move her heart partially back into her body before she was transferred into an intensive care unit, where they monitored her progress.

Seven days later, they operated again, creating more space for the heart to be fully contained.

Over a period of about two weeks, the heart naturally made its way into the chest as it was pulled down by gravity.

The surgeons then created a mesh to protect the heart, taking skin from under her arms and moved it round to join the middle of her body.

Vanellope is still lacking a chest bone and ribs and there have been suggestions that a new sternum may be created by 3D printing or from bone elsewhere in her body.

Dr Bu'Lock said Vanellope was given a "remote" chance of survival.

She said: "It's very rare indeed. Probably less than one baby is born with this a year in the UK. A lot of babies don't make it through the pregnancy.

"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."

Medical News Today reported on a March 2017 study that found six children born alive with the condition in the US had survived to at least one, at least one of whom had a good quality of life, with two others living on a ventilator.

Dr Bu'lock said that Vanellope was not guaranteed to survive, and there was a lot of work still to do, but she was hopeful.

"She is doing well. It's still uncertain. She has a long way to go. We are very pleased with things so far."