Seven years after Vanellope Hope Wilkins was born with her heart outside her body, she returned to the University Hospitals of Leicester NHS Trust (UHL) for a groundbreaking operation.
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.”
The East Midlands Congenital Heart Centre (EMCHC) is based at the University Hospitals of Leicester NHS Trust.
The centre identifies and treats patients with congenital heart defects (a fault in the structure of the heart and vessels which is present at birth). The centre consists of services to treat children and adults, and has a dedicated children’s cardiac ward, intensive care unit, theatre, catheter lab and outpatient department at the LRI, and similar dedicated facility for adults at the Glenfield Hospital.
The unit faced closure in 2012 as part of a national reorganisation but NHS England was persuaded that the East Midlands Service was still vital and could continue if the children’s section was relocated to the LRI to be co-located with other children’s and neonatal services.
The centre is also home to our internationally-renowned ECMO (Extra-Corporeal Membrane Oxygenation) service, founded by the HeartLink Charity 30 years ago, and which continues to treat some of the sickest babies, children and adults in the country.
