PALittle Vanellope Wilkins has become the first ever baby to survive being born with her heart outside her chest.
The newborn has been dubbed a ‘miracle baby’, after surviving her first surgery, which took place less than an hour after the birth at Glenfield Hospital in Leicester.
Doctors say Vanellope is now making good progress, much to the relief of her parents, Naomi Findlay and Dean Wilkins.
University Hospitals of Leicester NHS Trust/PANaomi and Dean had been warned by medical staff Vanellope had less than a ten per cent chance of survival and the parents knew the minutes after her birth were crucial.
The 43-year-old builder, and proud new dad, recalled her birth:
We were holding our breath, waiting for her to take her first breath. We didn’t dare breathe until she took her first breath.
When she cried, we cried. Twenty minutes went by and she was still shouting her head off — it made us so joyful and teary.
PAVanellope’s due date was Christmas Eve, but the couple’s little festive miracle came somewhat early when doctors at Glenfield Hospital, in Leicester, decided to deliver her a month prior by caesarean section.
Fifty medics were on standby at her first surgery – one of three – which saw staff insert a breathing tube into her heart – Vanellope, at this time, was just 50 minutes old.
Days later, her chest was opened to make space for the heart, which then settled back into her chest after gravity took hold over the next fortnight.
University Hospitals of Leicester NHS Trust/PAA third operation inserted a mesh guard to protect her heart, in place of ribs and covered up the area with skin taken from under her arms.
Dean and Naomi named their brave girl after a character in the Disney film Wreck-It Ralph, and gave her the middle name, Hope.
Mum-of-three Naomi, 31, 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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Vanellope’s name is undoubtedly apt and will hopefully serve as a source of strength, as doctors say she still has a long road to full recovery.
Consultant Anaesthetist Dr Nick Moore said:
She has a long way to go but so far at least she now has a chance at a future.
Vanellope is the first baby in the UK to survive a five-in-one-million condition known as ectopia cordis, which results in the heart growing outside the body as the baby develops in the womb.
PexelsJune Davison, Senior Cardiac Nurse at the British Heart Foundation, said:
Ectopia cordis is an extremely rare congenital defect, because it’s so uncommon, there are very few treatment options.
The prognosis does depend on the severity, location and any other abnormalities.
While there are cases of surgical repair, this remains a very serious condition with a low chance of survival.
PANaomi, from Nottingham, said doctors had consistently offered her the chance to terminate her pregancy, after experts told her: ‘The chances of survival are next to none, the only option is to terminate, we can offer counselling.’
The determined mum concluded:
In the end I just said termination is not an option for me.
PAThere’s still a long way to go for the new family.
Only 50 known cases have reached the age of 12.
The oldest known survivor of ectopia cordis is Christopher Wall, born in Philadelphia in August 1975.
A former emo kid who talks too much about 8Chan meme culture, the Kardashian Klan, and how her smartphone is probably killing her. Francesca is a Cardiff University Journalism Masters grad who has done words for BBC, ELLE, The Debrief, DAZED, an art magazine you’ve never heard of and a feminist zine which never went to print.