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.”
“It was decided that delivery by cesarean section would be best to reduce the risks of infection, risks of trauma or squashing of the heart during delivery and that surgery to provide some sort of covering to the heart would be needed after the baby was delivered,” Dr. Bu’Lock said.
Vanellope was subsequently placed into a protective sterile plastic bag when she was born.
‘The bag keeps the organs sterile but also keeps the tissues moist. We inserted a breathing tube into her mouth and gave medications to sedate her and stop her moving,” Dr. Bu’Lock said.
“Vanellope was born in good condition. She cried at birth and coped well with the early stabilization and her heart continued to beat effectively.”
Just 50 minutes after she was born, a 50-person team of doctors, midwives and nurses began a complicated and extremely dangerous operation to put Vanellope’s heart inside her body.
The operation involved widening the hole in Vanellope’s chest and using a plastic ring to hold it open. A plastic cover was then stitched over her chest in the hope that her heart would sink inside over the coming days.
Slits also had to be cut into Vanellope’s skin so that it could later be used to cover the hole in her chest.
It took nine days, but, against the odds, Vanellope’s heart sank into her chest. Surgeons then had to replace the mesh on her chest with a permanent membrane and create a special mesh to bring together her loose ribs and form a cage in her chest.
Then, for the first time in her short life, Vanellope’s chest was sealed.
Vanellope is now three weeks old, and her survival is nothing short of a miracle. She will be attached to ventilation machine for the foreseeable future as she adjusts to having all of her organs in her chest, but, with every passing day, her chances of leading a normal life increase.
“Before she was born, things looked very bleak, but now they are quite a lot better,” Dr. Bu’Lock said.
Whilst there is no denying that Vanellope’s recovery is going to take some time, the odds are finally in her favor. The odds of a baby with ectopia cordis surviving until birth have been placed at eight-in-a-million.
The operation which saved Vanellope’s life is rarely performed because most women whose babies have the condition chose to abort.
Vanellope is the first baby in the United Kingdom to have been born with the condition and survive. It has happened twice in the United States.
Now that medical science is consistently improving, more and more babies are beating the odds. Check out the story of this miracle baby who was born with a rare condition that attacked every part of his body:
We wish Vanellope all the best in her continued recovery.