A toddler who made medical history as one of the UK’s smallest and youngest patients to undergo open-heart surgery has returned to Leicester Royal Infirmary to thank the team who saved her life.
Fleur, now approaching her third birthday, was just 28 days old and weighed only 1.8kg when she underwent a complex nine-hour operation in Leicester after being diagnosed with a rare and life-threatening heart condition.
Born six weeks prematurely alongside her twin sister Ottilie in Nottingham, Fleur initially spent time in neonatal intensive care at Queen’s Medical Centre before being allowed home. However, within weeks, her parents noticed she was struggling to feed and breathe.
Picture credit: Leicester Royal Infirmary
She was rushed back to hospital, where a scan revealed she had Total Anomalous Pulmonary Venous Drainage (TAPVD) — a rare congenital condition affecting how blood flows through the heart and lungs.
Fleur’s mother, Finley, said: “Our world came crashing down when we were told Fleur was too small for the surgery she needed.”
With limited options available, specialists in Leicester stepped in. A team led by consultant congenital heart surgeon Ikenna Omeje arranged for Fleur to be transferred by the Children’s Medical Emergency Transport Team (CoMET) for emergency surgery at the Leicester Royal Infirmary, where her chances of survival were estimated at less than 20%.
Despite the risks, surgeons carried out the delicate procedure, adapting equipment to operate on such a tiny patient. Following surgery, Fleur required intensive support on an extracorporeal membrane oxygenation (ECMO) machine, a form of life support that oxygenates blood outside the body.
After six weeks in hospital, Fleur was finally well enough to return home with her family.
Speaking after being reunited with Fleur and her family at the hospital, Mr Omeje said: “I see hundreds of patients, but you really remember the special ones and Fleur was certainly special.
“She made history in Leicester as the smallest child to have open-heart surgery at 1.8kg, and I believe she’s also the youngest in the UK because she was premature. We had to adapt the oxygenator because of her size.
“We knew the surgery was risky, but we believe in pushing the boundaries. It is amazing and an honour to see her again — it has made my day.”
Picture credit: Leicester Royal Infirmary
Fleur’s father Joe and mother Finley returned to Leicester with both daughters to personally thank the team.
Finley told the surgeon: “You gave Fleur a life, and Ottilie has a sister because of you. We can never thank you enough.”
The family’s ordeal did not end there. Just weeks after returning home, Ottilie developed a severe respiratory virus and required hospital treatment. Soon after, Fleur also became unwell and suffered respiratory arrest, leading to another emergency transfer back to Leicester for further ECMO support.
“It felt like we were back home,” Finley said. “Fleur settled in quickly and over 10 days we watched her numbers slowly improve.”
By the twins’ first Christmas, Fleur had spent a total of 50 days in hospital.
Now thriving, the family say Leicester will always hold a special place in their hearts, describing the infirmary as their “Leicester home”.
They also praised the support of Heart Link Children’s Charity, which helped provide accommodation and support during Fleur’s treatment.
A spokesperson for the charity said Fleur’s story was a powerful reminder of the importance of supporting families through some of their most difficult moments.
