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Thomas Johnson

Immediately after Vanellope Hope Wilkins was born, she was put in sterile plastic to protect her heart — which was beating outside her tiny chest.

It was a moment that her parents, Dean Wilkins and Naomi Findlay, had hoped for but were not certain would actually come — a moment in which their baby girl would come into the world, and live.

The newborn, who was born Nov. 22 at Glenfield Hospital in Leicester, England, was delivered by Caesarean section several weeks premature with a rare and often fatal congenital condition called ectopia cordis, in which the heart is growing either completely or partially outside the chest cavity. Most babies born with the malformation are stillborn or they do not survive long after birth.

“It was overwhelming, wasn't it?” Wilkins, from Bulwell, Nottingham, recently asked Findlay about the birth of their first child, <a href="http://www.bbc.com/news/av/health-42328266/baby-born-with-heart-outside-chest">according to BBC News</a>.

“It was very overwhelming,” she agreed.

“Especially the part where we were just staring at each other because we didn't want to be told what was happening while it was happening. But, as soon as we heard her cry, that was it,” Wilkins said, turning toward Findlay. “We had a little cry, didn't we?”

She started: “It's like we held our breath through it all —”

“For her,” Wilkins added, talking about their daughter.

The details <a href="http://www.leicestershospitals.nhs.uk/aboutus/our-news/press-release-centre/?entryid8=54882">came in a statement</a> Wednesday from the University Hospitals of Leicester NHS Trust, where dozens of doctors, nurses and clinical staffers worked together late last month to deliver Vanellope and give her a chance to live. A pediatric cardiologist there said the newborn may become the first to survive the condition in the United Kingdom.


<i>
    [Three goodbyes in three days: Why these parents watched their children die at home]
  </i>


In June, Wilkins and Findlay learned they were expecting their first child, according to the statement from hospital.

They also learned early on that the fetus had an extremely rare condition and were told about the potential risks — that she could have other chromosomal abnormalities or other issues, and that she could die before she would ever get to live.

Scans showed her heart and stomach growing outside her developing body. Weeks later, her stomach had entered her torso, but her heart had not.

The soon-to-be parents rejected advice to terminate the pregnancy. They sought help from specialists. They underwent blood tests to determine whether the fetus had major genetic disorders. “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,” Wilkins said in the statement from the hospital. “At that point we decided to fight to give our daughter the best chance of surviving.”

And on that Wednesday morning in November, less than an hour after Vanellope was born — after she was put in a sterile plastic bag to protect her heart, and after she was given a breathing tube, fluids and medications to help her heart beat strong — she was ready to undergo complex surgery to put it into place.

“At around 50 minutes of age, it was felt that Vanellope was stable enough to be transferred back to the main theater where she had been born to the waiting anesthetists, congenital heart disease and pediatric surgical teams who began the task of putting her entire heart back inside her chest,” Jonathan Cusack, a consultant neonatologist within the hospital system, said in the statement.

<a href="http://www.leicestershospitals.nhs.uk/aboutus/our-news/press-release-centre/?entryid8=54882">According to the hospital</a>: “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. To ensure this didn’t happen, the plan was to use a special splint to support the edges of the larger hole that had been created in the front of her chest, attached to its own plastic tube. This meant it was possible to hang her heart outside of her chest to help create more space within, and allow a plastic sheet to be stitched around it to seal the heart away from the outside air.”

Since then, Vanellope has had two additional surgeries — one to remove the supporting tube and another to place her heart behind the skin of her chest wall, Frances Bu'Lock, a consultant in pediatric cardiology, said in an email sent Wednesday by the hospital.

Ben Birchall/PA Wire

“She's been lucky, if you like, in that she has a structurally normal heart, which most of these babies don't have and she didn't have any other abnormalities with the chromosomes. Sometimes the bowel is outside the body as well. She's not had any of those problems,” Bu’Lock said about the newborn, according to BBC News. “But she's also proved very resilient and she's had a great team to support her.”

About one in every 126,000 babies is born with ectopia cordis, and about 90 percent of them are either stillborn or die soon after birth, <a href="https://www.childrenscolorado.org/conditions-and-advice/conditions-and-symptoms/conditions/ectopia-cordis/">according to Children's Hospital Colorado</a>. That said, in most cases, babies born with the condition also have heart problems in addition to the heart's unusual placement; typically babies who survive are ones like Vanellope, who seemingly have no other heart issues.

Jack Rychik, director of the Fetal Heart Program at the Children’s Hospital of Philadelphia, said the prognosis hinges partly on the heart's structure. In the heart, he said, there are four chambers — two on the top and two on the bottom — as well as vital vessels; but in most cases of ectopia cordis, the heart structure is affected — whether it be holes, blockages or other developmental problems.

Rychik said there are more anticipated favorable outcomes in cases without other heart problems.

“If this particular patient had no structural cardiac abnormalities — just ectopia cordis — and had a normal genetics and chromosomal makeup, and it was detected prenatally and managed in an anticipatory manner — that's a threading of a needle that's pretty wide,” he told The Washington Post.

In any case, Rychik said, the challenge with ectopia cordis is the heart needs to be put back into the chest, which is often filled with the lungs and other organs.

“So the way to think about this is, you sort of have to be a bit of an architect and reconstruct the chest around the heart and do so in a manner that does not compress the cardiac structures and allows for function and allows for growth of the chest,” he said.

Now three weeks old, the baby has “more strength than you could ever imagine,” Wilkins, her father, said, according to BBC News.

“She's fighting it all the way and she's defying everything, isn't she?” he added, addressing the baby's mother. “What they're saying she can't be doing, she's doing it.”

<a href="https://www.washingtonpost.com/news/to-your-health/wp/2016/06/20/we-had-no-hope-the-amazing-story-of-the-baby-born-with-his-brain-outside-his-skull/?utm_term=.10086b5475bc" target="_blank">‘</a><a href="https://www.washingtonpost.com/news/to-your-health/wp/2016/06/20/we-had-no-hope-the-amazing-story-of-the-baby-born-with-his-brain-outside-his-skull/?utm_term=.10086b5475bc" target="_blank">We had no hope’: The amazing story of the baby born with his brain outside his skull</a>

<a href="https://www.washingtonpost.com/news/to-your-health/wp/2017/03/25/a-10-month-old-girl-had-a-parasitic-twin-protruding-from-her-back-until-surgeons-removed-it/?utm_term=.6fb2b2822a97" target="_blank">A 10-month-old girl had a parasitic twin protruding from her back — until surgeons removed it</a>

Texas Christian University, BS in journalism

Columbia University, MS in journalism

Lindsey Bever is a reporter for The Washington Post's Well+Being desk, covering chronic illness, mental health and navigating the medical system, among other issues. She was previously a reporter at the Dallas Morning News.

Lindsey Bever

The Washington Post

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