Miracle baby becomes first in the UK to survive being born with heart outside body

A baby born with an extremely rare condition in which the heart grows on the outside of the body has survived, in what is believed to be a UK first.

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 November 22 at Glenfield Hospital in Leicester.

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

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.

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

Naomi Findlay and Dean Wilkins, at Glenfield Hospital in Leicester with their daughter (Ben Birchall/PA)

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.

Ectopia cordis is an incredibly rare condition (University Hospitals of Leicester)

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

Explaining what it felt like after the birth, the 31-year-old full-time mum 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.

A scan of Vanellope Hope Wilkins showed the unusual position of her heart outside her body (University Hospitals of Leicester)

“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.”

Dean, 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.

Consultant paediatric cardiologist Frances Bu’Lock carried out the surgery (Ben Birchall/PA)

“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.

The couple were told the first 10 minutes after birth were crucial (University Hospitals of Leicester)

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.”


 

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