Charlotte and Luke’s baby boy showed all the signs of having a liver disease. And even though this turned out not to be the case, their experience on a paediatric liver ward left them with a deep desire to help other families, as Charlotte explains.
We were concerned that Louie was two weeks old and not gaining weight. The health visitor reassured us that it’s not that uncommon and even when we mentioned green poo, they told us not to worry. I did though, and when I got home, I googled ‘green poo’ and saw that it was fine. However, the same webpage indicated that white poo was a danger sign, and I knew that I had seen that. This confirmed our suspicion that there really was something up and we took Louie straight to our local A&E.
This happened to be Kings. They admitted us that night and because there was no room on the paediatric ward we were admitted onto Rays of Sunshine, the liver ward. Of course, at the time we had no idea that Kings was a specialist centre for paediatric liver care, but we learned a lot in a short space of time!
It was here that I first heard about Children’s Liver Disease Foundation. I was quite distressed about the situation which seemed to have happened so rapidly, and I got talking to another mum on the ward. She was lovely – a real lifesaver during a dark time – and she told me about the wonderful support she had received from the charity and how her daughter had been able to connect with other young people in her situation. I decided then and there that if Louie did have a problem with his liver, being involved with this charity could be our lifeline.
The doctors suspected that Louie had biliary atresia, they carried out a biopsy and were surprised when the results were inconclusive. Other liver conditions were mentioned, including Alagilles, but again no tests proved conclusive. And amazingly over time, all Louie’s test results returned to normal levels, and it seemed that he had healed. We still don’t know for sure the exact cause of his problem at that time – all we do know is that his liver is now healthy.
This didn’t change the fact, however, that we had glimpsed into the world of childhood liver disease and had a small taste of the impact it could have on a family. We wanted to do something to support CLDF and decided on a London to Paris bike ride!
It sounds a very ambitious plan, but we felt it needed to be big to encourage people to donate. Luke and I run a business, ZincWork, and we were fortunate that several of our employees opted to join us. We chose October for our challenge as it was the month of Louie’s first birthday, and we wanted to celebrate this milestone by raising £20,000.
Cycling 275 miles sounds really tough, but so is caring for and worrying about a poorly baby. In comparison, I honestly think the cycling was easier. It was an amazing experience and brilliant to think we were doing something so positive. We were so proud to complete the challenge and to smash our target, raising over £23,000.
It means a lot to me to know that this money will be going to help children and families affected by childhood liver disease. Prior to this experience, I don’t think we were even aware that liver disease could affect babies, but it is now certainly a cause very close to my heart.
