Baby girl with rare heart condition finally goes home for first time after life-saving surgery
A baby girl who had to undergo lifesaving surgery that was so delicate surgeons had to make and practice on a 3D model of her heart, has gone home for the first time after spending the first six months of her life in University Hospital Southampton.
Little Pippa Fulton was born premature and weighing just 2kgs – less than a bag of apples – and diagnosed with life threatening problems in her intestines as well as a complex malformation of her heart and main blood vessels, known medically as a transposition of the great arteries (TGA).
Her case was made even more complicated a by juxtaposition of the atriums, a rare anomaly of the heart’s collecting chambers, as well as a duplicate of the main vein inside Pippa’s upper body.
What was expected to be a short stay in hospital soon turned to months when Pippa was found to have an additional heart defect, called total anomalous pulmonary vein drainage. Pippa’s combination of heart problems has only been seen a handful of times worldwide.
Surgeons had attempted complex surgery on the tiny infant when she was just one day old, but despite best efforts the operation couldn’t be completed successfully. More tests were required as well as time for Pippa – and her heart - to grow bigger and stronger.
In the months that followed Pippa received intense medical treatment and spent time on the paediatric intensive care unit, high dependency unit and E1 ward at Southampton Children’s Hospital, based at University Hospital Southampton.
Mum Lizzie Fulton, 30, has been by her daughter’s side since she was born on August 6 last year, and has not spent a single night away from Southampton Children’s Hospital.
She said: “It’s been a very long six months. Pippa has had lots of complications during her stay, from pneumonia to a collapsed lung – but she’s fought through and been unbelievably brave, and we can finally see the light at the end of the tunnel.”
Finally, having reached a weight of 5.5kg, discussions about attempting to repair Pippa’s heart began again.
Mr Nicola Viola, lead congenital cardiac surgeon and Dr Trevor Richens, lead interventional paediatric cardiologist at Southampton Children’s Hospital, based at UHS, led the team.
Using a CT scan that showed the construction of Pippa’s heart chambers, they printed a 3D model of her heart that not only highlighted a further problem they hadn’t been aware of, but allowed the surgical team to rehearse the complex surgery beforehand.
The model was funded by Wessex Heartbeat, and made by Axial3D, a company in Belfast before it was transported back to UHS via courier.
On January 27, 2022, Pippa spent more than seven hours in surgery and the structure and function of Pippa’s heart was successfully repaired.
Speaking about the operation, Mr Viola said: “This was a very complex operation. In any major surgery like this there is always the risk of serious complications and making the 3D model of the heart gave us the chance to better understand and practice the procedure.
“We are very pleased to see Pippa responding so well and we are delighted she is finally able to be home with mum and dad, so they can begin life together as a family at last.”
Pippa’s dad, Nathan Fulton, 34, said: “Seeing our baby girl taken down for surgery was one of the longest and hardest days of our lives. There was this real mix of emotions, from the fear of someone so precious and tiny undergoing open-heart surgery to complete relief that the operation we had been waiting six long months for was finally happening.”
Pippa left UHS at the weekend and is now home in Whiteley with her mum and dad and their beloved dog, Peanut.
She will require oxygen treatment at home while her lungs continue to get stronger and will be monitored by the team at Southampton Children’s Hospital until she reaches adulthood.
Mum Lizzie, a teacher, added: “It was unbelievably emotional. We had many conversations over the months about Pippa not making it this far with lots of unknown days, so to finally know that she now had a chance of survival and to now have brought her home at long last is incredible – we can be a family together at last.”
Pippa was discharged from hospital on Saturday and has now had her very first cuddles with her doting grandparents.
Lizzie added: “Nathan and I would like to thank everyone, from the bottom of our hearts, who has cared for Pippa.
“We are so grateful to Mr Viola and Dr Richens and to all of the nurses, health care workers and the staff at Ronald McDonald House. We owe them everything. They have all been so kind, approachable and supportive throughout this whole ordeal. Not only have they taken exceptional care of Pippa, but they’ve also taken care of us too. There really aren’t enough words to show our gratitude.”
