Miracle girl, Vanellope, returns to the University Hospitals of Leicester NHS Trust for groundbreaking UK-first surgery

An expert team came together during the eight-hour operation at the East Midlands Congenital Heart Centre (EMCHC), at the Leicester Royal Infirmary, to reconstruct Vanellope’s chest. The surgery is essential to protect her heart as she continues to grow.

Vanellope was diagnosed in the womb with an incredibly rare condition - ectopia cordis - in which the heart is abnormally located either partially or totally outside of the chest. She was delivered by Caesarian Section at the Glenfield Hospital in November 2017.

Over the past seven years, specialist teams at UHL have been working together to monitor her very unique case and plan the first-of-its-kind operation, which took place on 16 April 2025.

The team included Consultant Paediatric Surgeon, Nitin Patwardhan, and Ikenna Omeje, Consultant Congenital Cardiac Surgeon. They were supported by visiting Cardiothoracic Surgeon, Nagarajan Muthialu, from Great Ormond Street Hospital for Children NHS Foundation Trust.

Speaking about the operation, Mr Omeje, said: “Vanellope’s case is completely unique and very rare, so we brought our expertise together and combined several different techniques to perform this surgery. I was there seven years ago when Vanellope was born as part of the team who were there to protect her heart. Since then, we have been waiting for the right opportunity to close the chest and give her heart protection.

“It was a tricky procedure, and it has been a long journey to get to this point, but the sense of satisfaction you get knowing you have been successful is very special. I am just happy to be able to help.”

During the operation, Vanellope was put onto a heart-lung machine called an extracorporeal membrane oxygenation (ECMO) machine - a medical device that temporarily takes over the functions of the heart and lungs. This allowed the medical team to carefully detach her heart from a thin layer of skin and carry out a bilateral osteotomy of the ribs, to allow them to be ‘stretched’ forwards and be joined together at the front to reconstruct her chest solidly.

Consultant Paediatric Surgeon at Leicester Children’s Hospital, Nitin Patwardhan, added: “Being able to perform a groundbreaking surgery, which has never been done before in the UK, is important for our patients and for the hospital. Our teams do incredible work every single day, and this procedure is another example of this.

“Vanellope is a one-of-a-kind case and I am proud that we have been able to work together to improve her quality of life. We wish her a speedy recovery and all the best for the future.”

The whole procedure, which has been several years in the making, involved a joint team from the EMCHC and Leicester Children’s Hospital totalling around 20 people, including anaesthetists, surgeons, operating department practitioners, perfusionists and theatre nurses.

Vanellope’s mum, Naomi, said: “It’s the fear of the unknown that is the hardest part and saying goodbye before the operation was very hard, but when I saw the consultants walking towards me after the surgery, I just knew from their faces that it had gone well, and I instantly felt a huge sense of relief.

“What they have done is truly amazing and I am so in awe of them, I can already see what a difference this operation has made, and I cannot thank everyone involved in her care enough. Vanellope inspires me every day, she is strong and brave, and I am so proud of her.”