When we were told that our son, Hugo had biliary atresia, it felt like the end of the world. One of the nurses at Kings gave us a leaflet about CLDF but I didn’t call straight away. We were getting our heads around administering medication, ensuring that he was taking enough milk so that he would grow, managing sleepless nights and learning how to be parents. It was an emotional time and passed in a bit of a haze.
I think it was when Hugo was about to start nursery when he was 12 months old that I contacted CLDF for the first time to request information for his day care. I remember making up endless excuses in my head about why I might not be able to call, but in hindsight think that I was not ready to face up to the fact that Hugo had a lifelong liver condition, and that calling would mean acceptance of this.
When I called I felt a surge of relief. I spoke to CLDF’s families officer who was so kind and just listened to our journey. It was so helpful to know that if I needed to talk to someone about my worries and how I was feeling, I could, and that there would be no judgement. After that first conversation, Tom asked me whether it would be ok to check in with me in a couple of months, and I remember feeling like he really listened, cared, and understood.
We have been fortunate in that aside from five hospitalisations in his first year with suspected cholangitis, Hugo has managed to be hospital free, growing and developing well and it’s good to be able to share good news on his progress with CLDF as well as the worry and the grief.
We have also found CLDF’s resources helpful, such as the education pack, leaflets on biliary atresia and information on travelling and insurance. Now that Hugo is becoming more aware of his scar, we have started going to some family events too. I do value sharing experiences with other parents who just get it, and who share the same worries and questions about the future as we do. I also love meeting the inspirational teenagers who are just getting on with their lives.
As Hugo grows older, I imagine that he will benefit greatly from meeting children with liver disorders like him, who will understand and hopefully support him. I worry that he might be bullied at school, and about how he will feel when he realises that he has a liver condition. It is so reassuring to know that CLDF run residential events for children and young people and I absolutely love watching the clips of Talk, Tell, Transform (even though I often find myself in floods of tears) I really hope that CLDF will be able to continue to offer such invaluable support.