Like most new parents, Rosie and husband, Clayton, had no idea that prolonged jaundice was a sign of liver disease in babies, but at her son Marley’s six-week check, the GP knew that something was not right.
“Marley had fluctuating jaundice,” says Rosie. “So he was never persistently jaundiced. Some days were more noticeable than others and Marley is our first child, so we didn’t recognise his other symptoms which included white poo and severe malabsorption. I had asked our health visitor about this but was assured everything was fine. Our GP was amazing, though. She straight away referred us to our local paediatrician and I’m so grateful she did.
“The paediatrician reviewed him, took bloods and we received a call the next day to come straight back in. We spent the day in Bath Hospital having tests done and were then referred to Birmingham Children’s Hospital. Within two days of being in Birmingham, Marley was diagnosed with alpha 1 anti-trypsin deficiency.
“In September 2023, when he was just 13 months old, we were admitted to Birmingham as an emergency because Marley’s liver had started to decompensate suddenly and unexpectedly. It was during this visit that we had to undergo the transplant assessment which was unplanned but just demonstrates how poorly he was. He went live on the register in November last year, after receiving his vaccinations.
“Marley was on the list for seven months until he received his transplant in June this year. I have to say he became very poorly, and we came very close to him being transferred to the palliative care pathway, as he would have struggled to survive the surgery if he had to wait any longer than he did. We all basically lived in the hospital from September until July. His whole body was overcompensating for how poorly his liver was.
“Marley’s recovery, however, was incredible. We were in Birmingham for three weeks when his transplant took place but within these three weeks, he improved and recovered amazingly. He did need a week in our local with Rotavirus but since then, Marley has flourished.
“He’s making progress in all areas and it’s wonderful to have a happy, healthy toddler, who keeps us very busy. Marley is very sociable. He enjoys chatting and singing, playing football with his daddy and playing with his friends at nursery. He loves cars, planes and trains, fish and cats.
“We are so grateful to Marley’s donor and family, who made the incredible decision to donate organs and save him. We are also incredibly grateful to all the staff at both Bath Royal United Hospital (Children’s ward) and Birmingham Children’s Hospital (ward 8), who worked wonders to keep Marley well enough to receive his transplant, make his amazing recovery and survive!”
