Vanellope Wilkins was saved by skilled doctors at Glenfield Hospital in Leicester after being given less than 10 per cent chance of survival when she was diagnosed with the rare condition
BATTLING baby Vanellope Wilkins has become the first in Britain to survive being born with her heart outside her body.
She had her first surgery 50 minutes after birth and is now making good progress at Glenfield Hospital in Leicester.
Proud dad Dean Wilkins told last night of "miracle" baby Vanellope’s first tense moments after being born with her heart outside her body.
He and partner Naomi Findlay had been warned she had less than a ten per cent chance of survival and knew the minutes after her birth were crucial.
Builder Dean, 43, said: “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.”
Vanellope had been due to arrive on Christmas Eve but doctors at Glenfield Hospital in Leicester decided to deliver her a month early by caesarean section.
Fifty medics were on standby and she had her first surgery, to insert a breathing tube and lines into her heart, when just 50 minutes old.
Days later her chest was opened to make space for the heart, which then settled back into her chest due to gravity over the next two weeks.
A third operation inserted mesh to protect it like ribs would, and covered up the area with skin taken from under her arms.
Dean and Naomi named the battler after a character in the Disney film Wreck-It Ralph.
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."
She told Good Morning Britain: "The main storyline is that she's like a little glitch and she has this determination to win this race and the obstacles that are thrown at her.
"As a family we are very much blessed to have a little one who is so strong.
"Each week she grew stronger and that was something that was very special to us, a way of her defying the odds of medical professionals."
The couple gave her the middle name Hope.
The 4lb baby, now recovering in the hospital’s Paediatric Intensive Care Unit, is Britain’s first to survive being born with a five-in-a-million condition known as ectopia cordis.
It results in part or whole of the heart growing outside the body as the baby develops in the womb.
Dean and Naomi were warned early on that the odds were stacked against their daughter.
Naomi, of Bulwell, Notts, said: “All the way through it was, ‘The chances of survival are next to none, the only option is to terminate, we can offer counselling.’
“In the end I just said that termination is not an option for me.”
Tests went on to show that, apart the heart condition, Vanellope was healthy.
Dean recalled: “When those results came back as low risk of any abnormalities we jumped up and down in the living room and cried.
"We decided to fight to give our daughter the best chance of surviving.”
Dean, who has one son from a previous relationship, went on: “The moment she was born I realised we made the right decision.
“Some mums still terminate and if we can get out there that there is a hope and that it can be done then it’s giving all those mums out there a chance.”
Medics are increasingly optimistic Vanellope will beat the odds.
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.”
Experts said most babies with the condition die just hours after birth. Two in the past decade did not survive surgery, and the medics said they were unable to find older UK records.
June 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.”
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.
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