It’s every parent-to-be’s worst fear—learning that their unborn baby isn’t in perfect health. And that worst fear came true for UK parents Naomi Findlay and Dean Wilkins during a nine-week scan, when they discovered that their unborn baby had a rare condition called ectopia cordis.
The condition, where the heart grows outside of its chest cavity, affects five in a million births. And the survival rate is also low, at less than 10 per cent. Findlay and Wilkins were advised that termination would be the best course of action, but they decided to hold on hope.
“At that point we decided to fight to give our daughter the best chance of surviving,” Wilkins said, in a statement from Glenfield Hospital in Leicester, England And thank God they did. Their daughter Vanellope’s birth was carefully planned, involving a team of around fifty specialist medics. An early C-section delivery was scheduled for November, rather than the original December due date.
And when Vanellope was delivered, she entered the world crying...which was the sound everyone wanted to hear. “When she came out and she came out crying, that was it," Findlay told Caroline Davies at The Guardian. "The relief fell out of me." In order to protect her extremely fragile heart, baby Vanellope was immediately placed into a sterile plastic bag with a breathing tube, fluids and medication. She then had to undergo complex open-heart surgery at just a few hours old.
The statement from Glenfield Hospital explains, “The actual defect in baby Vanellope’s chest wall was quite small. The main concern with repositioning her heart was that the arteries and veins which bring blood to and from the heart were extremely elongated, and might become kinked and blocked when the heart was placed inside the chest wall.” The brilliant medical team successfully overcame the issue through the use of a special splint. Vanellope then had to undergo two additional surgeries to remove the supporting tube and to place the heart behind the skin of her chest wall.
Vanellope is now three months old and is the first baby in the UK to survive ectopia cordis. "The moment she was born I realised that we had made the right decision," said her father. "We know this is going to be a rollercoaster and have started to prepare ourselves for the difficult times ahead, but we needed to give her a chance, and the team here have done that."
Thanks to the faith of her parents, the incredible expertise of the hospital staff, and her own resilience, baby Vanellope overcame the odds. Given this incredible story, we’re sure that she and her parents will be an inspiration to any future families finding themselves in similar situations. Never give up hope!