Having a child on the transplant list is tough. And when that child is too young to understand what they are going through, it can add to that stress. So we’re particularly pleased to hear how our book, Joe’s Transplant Story, is helping two-year-old Sebbie, as his mum explains.
Sebbie has biliary atresia and, when his Kasai failed, he received a liver transplant when he was just six months old, for which we are truly grateful. Unfortunately, last August, about a year after his first transplant, Sebbie was relisted for transplant, as it was found that his biliary complications were unable to be corrected with interventional radiology or surgery.
We’re really hopeful that transplant will give Sebbie his quality of life back, as he’s been living with an external bile drain and bag to keep him healthy for a year and a half now. This gives him a lot of pain and necessitates regular hospital admissions, along with requiring a lot of daily maintenance. So, although going through this all again is a daunting prospect, particularly as Sebbie now has a baby sister, we know it’s for the best.
Obviously, none of this is easy to explain to a two-year-old so we were delighted when Kate at CLDF sent us the transplant story book. This has been a huge help to Sebbie.
We’ve changed all the names of characters to his doctors and nurses and the name of his hospital, and it’s really enabled him to understand what’s happened to him, and what’s going to happen to him. Seeing a picture of a child with a bile drain, just like him, which he doesn’t even see in real life, has been invaluable and has given him the language to be able to talk about his own experience. It’s one of his favourite books and he’s always asking us to read it!
Sebbie’s doing amazingly right now, so we’ve no idea how long we’ll have to wait. We are just trying to enjoy this period of calm before the next transplant and this bedtime story book is certainly helping us with that.
Joe’s Liver Transplant Story is designed to help families with a child on the waiting list for a liver transplant or who underwent the surgery when they were too young to understand. If this is you and you live in the UK , email families@childliverdisease.org to find out more.
