One year after a pioneering first‑of‑its‑kind chest reconstruction surgery at the East Midlands Congenital Heart Centre (EMCHC), Vanellope’s mum, Naomi, has praised the surgical team who have cared for her since birth.
Born with ectopia cordis – a rare condition where the heart develops outside the chest – Vanellope spent the first years of her life having to wear a protective brace. However, in April 2025, surgeons at the University Hospitals of Leicester NHS Trust (UHL) completed a complex and long‑planned procedure to reconstruct her protective chest wall, giving her heart the protection it had never previously had.
Now, one year later, Vanellope’s family and her clinical team are celebrating the successful outcome.
Reflecting on the anniversary, Mr Nitin Patwardhan, Consultant Paediatric Surgeon at Leicester Children’s Hospital, said: “Vanellope is truly a one‑of‑a‑kind case, and to see her doing so well is a testament to her strength, her mum Naomi, and to the dedication of everyone involved in her care.
“This procedure pushed the boundaries, and we are proud of the life‑changing difference it has made to her and her family. No two surgeries are ever the same, but we hope to be able to use this case as a way to share our learning with other hospitals in the future.”
Now her heart is protected, Vanellope has been able to enjoy activities like trampolining and swimming.
Mum, Naomi, says the surgery has transformed her and her daughter’s life and made Vanellope even more strong and determined. She said: “One year ago, I lived in constant worry about her heart. Today, we’re watching her play and join in with everything she loves, without the constant fear that something could hurt or damage her heart.
“The team at Leicester gave Vanellope a better future. Without their input and specialist work, Vanellope wouldn’t be where she is today. I will forever be grateful for the care, compassion and expertise they have provided over the last eight years.
“Vanellope is braver than I ever knew a person could be, and I’m so proud of her for everything she has achieved and the obstacles she has overcome. As a mother it has been an extremely overwhelming journey with many highs and lows. I think it’s safe to say I really do get to call Vanellope, not only my daughter, but an amazing warrior princess.”
The surgery was performed by a multidisciplinary team of around 20 specialists from EMCHC and Leicester Children’s Hospital. The complex operation involved placing Vanellope on an extracorporeal membrane oxygenation (ECMO) machine and performing bilateral rib osteotomies to create a solid, protective chest wall—something not previously carried out in the UK for a patient with her condition.
Mr Ikenna Omeje, Consultant Congenital Cardiac Surgeon, added: “Thinking back to the operation, one year ago, it is amazing to think about what a difference we have been able to make to Vanellope’s quality of life. The procedure was the culmination of years of planning and teamwork across our specialist services, and it really goes to show how when we come together, we can achieve something truly remarkable.”
The East Midlands Congenital Heart Centre (EMCHC), which is based at the University Hospitals of Leicester NHS Trust, 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.