Pioneering surgery for baby born with a heart outside the chest

In a surgical first for the UK, a pioneering reconstructive procedure has been successfully carried out on Vanellope Hope Wilkins, a seven-year-old girl born with her heart outside of her chest – a condition known as ectopia cordis.

Performed at the East Midlands Congenital Heart Centre, based at Leicester Royal Infirmary, the operation involved constructing a rib-based protective cage around her heart, marking a significant milestone in congenital cardiac surgery.

Vanellope was born in 2017 with her heart completely outside her chest wall and was given less than a 10% chance of survival.

She survived three initial surgeries at Glenfield Hospital in Leicester that gradually repositioned her heart into her thoracic cavity.

Since then, she has worn a chest brace for protection because she was born without a sternum.

Under the lead of consultant paediatric surgeon Nitin Patwardhan and congenital cardiac surgeon Ikenna Omeje, Vanellope has undergone a procedure never before attempted in the UK: a rib osteotomy to create a permanent, internal protective structure for her heart.

The surgical plan, meticulously prepared over months, included the detachment of cardiac tissue that had adhered to her skin, followed by bilateral rib manipulation.

Vanellope was placed on cardiopulmonary bypass to allow safe handling of the heart and pulmonary artery, which had become tethered to the superficial tissue.

The bilateral rib osteotomy – involving intentional fracture and repositioning of the ribs – was then performed to engineer a supportive cage within the chest. The operation lasted over nine hours.

Mr Patwardhan, who was also part of the original 50-member medical team at Vanellope’s birth, said this is a one-of-a-kind operation.

To take her through this next stage of life with a structurally protected heart, using her own anatomy, is a surgical achievement with potentially global implications.

Post-operative imaging showed a well-formed thoracic cavity with stable cardiac positioning.

The University Hospitals of Leicester NHS Trust posted on LinkedIn: ‘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 UK-first operation.

A 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.

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

Ikenna Omeje said: ‘Vanellope’s case is 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 there to protect her heart. Since then, we have been waiting for the right opportunity to close the chest and give her heart protection.’

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 the hospital. Our teams do incredible work every single day, and this procedure is another example of this.’

The entire procedure, which took several years to develop, involved a team of around 20 people, including anaesthetists, surgeons, operating department practitioners, perfusionists and theatre nurses.

The procedure highlights the importance of inter-hospital collaboration, with visiting experts from Great Ormond Street Hospital sharing their expertise.

Vanellope will not require further reconstructive surgery, and her quality of life is expected to improve significantly.

Her mother, Naomi Findlay, expressed profound gratitude to the surgical teams and the NHS. ‘This team has not just saved her life, they’ve given her a future,’ she said

Published: 19.05.2025
surgery
connecting surgeons. shaping the future
AboutContact
Register
linkedin facebook pinterest youtube rss twitter instagram facebook-blank rss-blank linkedin-blank pinterest youtube twitter instagram
Send this to a friend