The worst news that a pregnant woman can receive is that their unborn baby has a potentially fatal abnormality. When 31-year-old Naomi Findlay went for her nine-week scan, she was told that her baby’s heart was growing outside their body and advised to terminate the pregnancy.
Why? The chances of a baby being born with the heart outside their body and surviving are “next to zero”. The condition is known as ectopia cordis, and it occurs in around eight in every million births, causing a heart to grow along a spectrum of anatomical locations.
“I burst into tears,” Naomi said of the diagnosis. “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 counseling’, and things like that,” she continued. “In the end, I just said that termination is not an option for me. If [death] was to happen naturally, then so be it.”
Along with her partner Dean Wilkins, Naomi’s baby was due to be born on Christmas Eve, but she was delivered by a cesarian section on November 22.
Despite having such a bleak prognosis early in her pregnancy, Naomi said that they found hope when they went for later scans and discovered that with the exception of her heart, their baby, who they named Vanellope Hope Wilkins, was developing normally.
Prior to Vanellope’s birth, the couple paid for a blood test to check for further abnormalities, and, amazingly, it came back clear.
“When the results of that test came back as low risk of any abnormalities, we jumped up and down in the living room and cried,” Dean said. “At that point, we decided to fight to give our daughter the best chance of surviving.”
However, when they saw the reality of their daughter’s condition after her birth, it was clear that they had a real fight on their hands.
Frances Bu’Lock, a consultant pediatric cardiologist at Glenfield Hospital in Leicester, England, was instrumental in helping Naomi and Dean begin this fight, and he did everything in his power to give Vanellope the best chance of survival.
“We came together as a team of fetal medicine doctors, obstetricians, anesthetists, cardiac and abdominal surgeons and cardiologists to review all of the available information and discuss how best to plan for a delivery, surgery and subsequent care.”
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