In a remarkable medical feat, Vanellope Hope Wilkins was born on November 22, 2017, at Glenfield Hospital in Leicester with her heart almost entirely outside her chest, defying incredible odds from the start.
The condition, known as ectopia cordis, left doctors stunned as they prepared for one of the rarest births in UK history.
Diagnosed with the extremely rare condition known as ectopia cordis during a nine-week scan, Vanellope’s parents, Naomi Findlay and Dean Wilkins, were initially advised that termination was the only option due to the severity of the defect.
However, the courageous family chose to proceed, and a team of around 50 specialists prepared for her cesarean delivery.
Her heart and part of her stomach were growing externally due to the absence of a breastbone, requiring meticulous planning by the entire medical unit.
Ectopia cordis affects only a few cases per million births, and survival rates are extremely low, with Vanellope given less than a 10 percent chance of living beyond the first hours.
Immediately after birth, Vanellope underwent three operations to carefully place her heart back inside her chest cavity, making her the first known survivor of this condition in the UK.
Surgeons worked tirelessly to protect the exposed organ while managing elongated blood vessels.
After spending 14 months in hospital, she was finally allowed home to Nottinghamshire, but required ongoing protection for her vulnerable heart with a chest brace as she adapted to daily life.
Now seven years old, Vanellope is described by her mother as a “happy little thing” who brings joy despite being autistic and non-verbal, requiring 24-hour one-to-one care from her devoted family.
Her parents from Nottinghamshire have faced a journey of strength and bravery, with Naomi expressing immense pride in her daughter’s achievements and resilience through every medical challenge.
In April 2025, Vanellope returned to the University Hospitals of Leicester for groundbreaking UK-first surgery to reconstruct a protective cage around her heart using her own ribs.
The complex eight-to-nine-hour procedure involved specialists detaching parts of her heart from the skin and repositioning ribs, successfully creating a permanent structure to safeguard her heart and improve her quality of life.
As Vanellope recovers and looks forward to an improved quality of life without her brace, her story stands as an inspiration of medical innovation and human perseverance, with her family calling for greater support for children with complex needs.