Nearly three years after becoming the youngest baby in the UK to survive open‑heart surgery, Fleur returned to the Leicester Royal Infirmary with her family to thank the surgeon who saved her life.
Fleur was delivered six weeks early, with her twin sister Ottilie, but at just 28 days old – 12 days before her due date – and weighing just 1.8kg, she is believed to be the youngest baby in the UK to undergo open heart surgery.
The twins were born in Nottingham, and after a few weeks in the Queen’s Medical Centre (QMC) neonatal intensive care unit, were taken home. But after two weeks, Fleur started to struggle with her feeding and breathing and was taken to A&E at QMC where she spent five days in paediatric intensive care. It was there that a CT scan confirmed Fleur had a rare heart defect called Total Anomalous Pulmonary Venous Drainage (TAPVD) – a rare congenital heart condition where all four pulmonary veins drain into the right atrium instead of the left, forcing blood to recirculate to the lungs.
Mum, Finley, said: “Our world came crashing down when we were told Fleur was too small for the surgery she needed.”
That’s when the Leicester Royal Infirmary (LRI) team, led by Consultant Congenital Heart Surgeon, Ikenna Omeje, stepped in and the CoMET (Children’s Medical Emergency Transport Team) transferred Fleur to Leicester for emergency surgery, where the family was told there was less than 20% chance of survival.
After Fleur’s nine-hour surgery, she needed to go on an extracorporeal membrane oxygenation machine (ECMO) – a temporary life-support which pumps blood out of the body, reoxygenates it and returns it. Her chest was closed after a week, and six weeks later the family of four could return home.
Parents Joe and Finley, along with Fleur and Ottilie, now approaching their third birthday, recently returned to the LRI to say thank you to the surgeon who saved Fleur’s life.
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, but I believe she’s also the youngest in the UK because she was premature. I remember we had to adapt the oxygenator because of her size.
“We knew Fleur’s surgery was risky, but we believe in pushing the boundaries and I believed we had the ability to do it. The trust shown in us by her parents gives us motivation to do our utmost, and it is amazing and an honour to see her again. It has made my day.”
Finley told Mr Omeje: “You gave Fleur a life, and Ottilie has a sister because of you. We can never thank you enough.”
However, the family were then faced with a second battle when just two weeks after returning home, Fleur’s sister, Ottilie, developed a severe respiratory virus and started to struggle with her breathing, which needed three nights in the QMC. After the family returned home, Fleur then developed a cough, and after going into respiratory arrest, was once again transferred to Leicester under an emergency EMCO referral.
Finley said: “It felt like we were back home, and Fleur settled in on the Cardiac Paediatric Intensive Care Unit very quickly. For the next 10 days we watched her numbers slowly improve and we were finally transferred back to the Queen’s Medical Centre and, two weeks after that, we finally returned home with two healthy girls.”
By the twins’ first Christmas, Fleur had spent 50 days in hospital.
Finley and Joe said they would always hold a special place in her heart for Leicester Royal Infirmary calling it their “Leicester home”.
She added: “The dedication of the teams who cared for the twins, and Heart Link charity, which provided support for us while Fleur was in hospital, including a place to stay, were brilliant. The charity supported us and found somewhere for us to stay with both our girls. We didn’t have to worry about travelling or leaving either of the twins. We hope no family ever has to go through all of this, but we are so grateful for all the help and support we received from the hospital and Heart Link.”
Graeme Williams, on behalf of the charity, said: “Seeing Fleur thrive brings immense joy to all of us at Heart Link, as well as to the families who support our charity. Knowing that she has faced ECMO not just once, but twice, makes Fleur’s progress deeply meaningful and touches all our hearts.
“For everyone at Heart Link, Fleur’s recovery is far more than a single success story — it’s a powerful reminder of why the work we do matters so much, and why we remain committed to supporting children and families through their most difficult moments.”