Girl born with heart outside her body survives surgery in UK first

01 Jan 2018

Ectopiacordisis thought to affect 5 to 8 children in every million and chances of survival are less than 10 per cent.

A baby that needed surgery within an hour of being born to correct a rare condition that caused her heart to grow outside her body has survived a life-saving operation in what is thought to be a UK first.

Vanellope Hope Wilkins was diagnosed with the condition ectopiacordis after a nine week pregnancy scan showed her heart and part of her stomach had developed on the outside of her body.

Surgeons at Glenfield Hospital, a specialist children’s heart centre in Leicester, initially believed Vanellope would be impossible to save.

Surgeons recommendeda termination to her parents as the chances of survival were so low, less than 10 per cent, but Vanellope’s mother, Naomi Findlay, said “this wasn’t an option” for her.

Frances Bu’Lock, the consultant paediatric cardiologist at Glenfield Hospital, said Vanellope’s chance of survival initially looked “remote”.

“I had seen one in foetal life around 20 years ago but that pregnancy was ended,” she said.

“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.”

However after three surgeries, to move her heart into her chest and create an artificial rib cage and sternum, she is now believed to be the first successfully treated case of ectopiacordis in the UK.

Vanellope was due to be delivered on Christmas Eve but was born by caesarean on 22 November and life-saving surgery began within the hour.

Her father, Dean, 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.”

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