Haywards Heath toddler’s liver transplant ‘the best gift we could have hoped for’

Little Isabella Swain was born with the rare and life-threatening disease, biliary atresia. The only indication her parents, Gemma and Alex, had that something was wrong was that she was jaundiced.

Gemma said: “Although I mentioned this on several occasions, I was reassured.

“And of course, I know that lots of babies are jaundiced and Isabella didn’t look like she had a particularly severe case. What I didn’t know then is that prolonged jaundice in newborns can be a sign of liver disease.”

When Isabella was six weeks old and still jaundiced, a health visitor referred her for tests and biliary atresia was diagnosed.

Emergency surgery followed and although she was stable for a couple of months, her condition soon deteriorated, and the next few months were a rollercoaster of hospital admissions as she battled a series of complications. Finally, in January this year, doctors told Gemma and Alex that Isabella’s only hope was a liver transplant.

“We joined the many other families waiting for that call,” said Gemma. “Luckily for us, we didn’t have to wait that long. A suitable liver became available in March and Isabella’s transplant took place at Kings College Hospital in London.”

Although the surgery was a success, Isabella suffered a number of setbacks afterwards and it is only since October that she has enjoyed a continuous spell out of hospital.

“It’s been a tough year,” admitted Gemma. “Lockdown began soon after Isabella’s transplant which meant staying in hospital with her on my own without any visitors. However, she has proved herself a real little fighter – she has overcome so much and is now starting to explore and enjoy things like any other toddler. Christmas will be special this year, but Isabella has already received the best gift we could have hoped for – the gift of life – and we can never thank her donor’s family enough.”

The family’s experience also means they have a clear message for other new parents: “Along our journey with Isabella, we received a lot of information from Children’s Liver Disease Foundation (CLDF) and we now know that she should have been referred for a blood test between two and four weeks of age to investigate the causes for her jaundice,” said Gemma. “Every new parent should know that prolonged jaundice is a warning sign of liver disease and had I known how serious it was, I would have pushed for investigations much sooner.”

Alison Taylor, chief executive of Children’s Liver Disease Foundation (CLDF), added: “This has been a difficult year for everyone but particularly for those families whose children have serious health conditions, for whom the pandemic has meant an added complication. We’re delighted to see how well Isabella is doing now and grateful to Gemma for helping raise awareness of the dangers of prolonged jaundice in newborn babies.”

To support CLDF this Christmas see childliverdisease.org/donate

For more information on CLDF visit childliverdisease.org.