Vanellope Wilkins: the UK baby born with her heart outside her body

Vanellope Wilkins, born with her heart outside her chest, is first UK child to survive rare condition

Miracle Baby Operation
Vanellope Wilkins, whose heart is outside her chest, is treated at Glenfield Hospital in Leicester
(Image credit: NHS)

Baby Vanellope Hope Wilkins has survived a third operation after being born three weeks ago with her heart outside her body.

Vanellope’s condition, known as ectopia cordis, required three separate operations at Glenfield Hospital in Leicester. Her survival has been described as nothing short of a “miracle” as the hospital believes she is the first UK child with the rare condition to survive.

What is ectopia cordis?

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Ectopia cordis is a serious congenital malformation in which the heart is located either partially or totally outside of the chest cavity. Normally, there is an indent on the left lung which creates space for the heart, but sufferers do not have this.

What are the chances of survival?

Ectopia cordis is found in one in every 126,000 births and it is severe; 90% of babies born with this condition are either stillborn or die within a few days, according to Children’s Hospital Colorado.

The Daily Telegraph reports that Vanellope’s parents – Naomi Findlay, 31, and Dean Wilkins, 43, from Nottingham – were told initially that their “best bet was to terminate” the pregnancy. But the couple describe Vanellope as “a real fighter”, the BBC says.

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Vanellope’s medical procedures

Vanellope was delivered by caesarean section on 22 November, with her heart outside her body and without a breastbone, the BBC reports. Within an hour, 50 medical staff – obstetricians, heart surgeons, anaesthetists, neonatologists and midwives – helped perform the first of three operations to put her heart back into her body.

In the first procedure, special lines were inserted into her umbilical cord to give fluid and medication to support her heart, gradually creating more space for the heart to fit back in, The Daily Telegraph reports. The second procedure, seven days later, opened the hole in her chest wider so medical staff could create more space for the heart to fit back in, the Telegraph adds.

Over about two weeks, the heart naturally made its way back into the chest. The final operation involved doctors taking skin from under her arms and moving it round to join in the middle of her body, The Independent says.

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