Watch: Baby girl from Bulwell is first in the UK to survive being born with heart outside her chest

Vanellope Wilkins heart operation
Vanellope Hope Wilkins was born prematurely by caesarean section on November 22. Photo: Ben Birchall/PA Wire

A baby girl from Bulwell is believed to be the first in the UK to survive being born with her heart outside her body.

Vanellope Hope Wilkins was diagnosed with ectopic cordis after a nine-week scan at Nottingham City Hospital revealed her heart and part of her stomach had grown outside her torso.

Her parents, Naomi Findlay and Dean Wilkins, were told by doctors she may not survive, and that one option was a termination because of the high risks of serious complications.

But she was delivered by Cesarean Section on Wednesday, November 22, by a team of around 50 clinical staff at Glenfield Hospital in Leicester.

After a series of operations including one within an hour of her birth, she is now recovering.

The couple opted for the risky surgery after paying for a blood test to check the risk levels of the three most serious chromosomal problems associated with the condition.


The video and pictures below include graphic images of Vanellope’s condition and surgery which some people may find upsetting


Dean said: “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. At that point we decided to fight to give our daughter the best chance of surviving.”

Naomi added: “I had prepared myself for the worst; that was my way of dealing with it. I had brought an outfit to hospital that she could wear if she died. I’m now confident she won’t wear it so I’m going to donate it to the hospital.

“I genuinely didn’t think my baby would survive, but the staff at Glenfield have been amazing. They’ve supported us, explained everything that might happen and involved us in the plans to keep my baby safe.  I can’t put in words how grateful I am for everything they have done. They are amazing.

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Naomi and Vanellope just after the birth, before Vanellope was taken to surgery.

Vanellope Hope was due to arrive on Christmas Eve, but the condition meant doctors decided she needed to be delivered early.

Ectopia cordis was confirmed at a scan carried out by Glenfield’s fetal cardiology consultant Frances Bu’Lock.  She said: “When Naomi was 13 weeks pregnant I received a call about the potential complications that had been identified by a sonographer in Nottingham.  I scanned Naomi at 16 weeks when her baby was a little bit bigger and by this time it seemed that the bowel was back where it should be, but that the heart was still beating away outside the front of baby’s chest.  Other than that, baby appeared essentially normal.”

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Scans showed Vanellope’s heart was growing outside her chest.

She added: “Naomi and Dean understood that for their baby to have any chance of survival outside the womb, Naomi would need to get to as close to her due date as possible, and baby would need to grow well and not to develop any other problems.

“We explained to them that baby would need surgery as soon as she was born where we would work to keep the heart safe so it could go back into the chest cavity and be covered with skin. However, chances of successful surgery and long term survival were very poor; they understood that and wanted to continue with the pregnancy.”

On remembering how it felt to go into theatre that morning with Naomi, Dean said: “Both Naomi and I were holding our breath waiting to take her take her first breath; we didn’t dare breathe until she took her first breath.

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Baby Vanelope was taken to surgery within an hour of being born.

“When she cried, we cried. I felt hopeless and just held onto Naomi and was staring into her eyes praying that it was all going to be ok.”

After being delivered Vanellope Hope was immediately wrapped in a sterile plastic bag, then taken into her first surgery.

Consultant Neonatologist Jonathan Cusack said: “Vanellope was born in good condition. She cried at birth and coped well with the early stabilisation and her heart continued to beat effectively.  During the stabilisation, we continually dripped warmed saline solution onto her heart to stop the tissues drying whilst she was under a warmer.

“At around 50 minutes of age, it was felt that Vanellope was stable enough to be transferred back to the main theatre where she had been born to the waiting anaesthetists, congenital heart disease and paediatric surgical teams who began the task of putting her entire heart back inside her chest.”

Babies born with the condition generally have less than a 10 per cent chance of survival, depending on the risks of other conditions as well as the ability to place the baby’s heart safely in the chest.

Cases such as Vanellope’s, where everything else is essentially normal, are even rarer.

Consultant Anaesthetist Dr Nick Moore added: “We transferred baby Vanellope to our Paediatric Intensive Care Unit where she will need to stay for at least several weeks, with her family by her side, while she hopefully gets strong enough, and big enough, for her heart to be placed fully within her chest and covered in her own skin. She has a long way to go but so far at least she now has a chance at a future.”

Dean said: “The moment she was born I realised that we had made the right decision.

“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.

“People always knock the NHS, but all we have seen from the team at Glenfield is kindness and a desire to keep Naomi and Vanellope safe and I can’t begin to thank them for what they have done for my girls.

“Regardless of what the future holds we wanted to share our story and how the team at Glenfield stood by us and fought to give her a chance of life.”

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