Having a child on the transplant waiting list is tough. So, we’re so grateful to Jemma, mum to two-year-old Charlie, for taking the time to share her experience.
Charlie was born on 13th November 2022 . All went well with birth and home we went to start our life as a family of five. Charlie was a bit jaundiced, but it wasn’t very noticeable and didn’t cause us any alarm. My health visitor, Linda, however, was not happy that the jaundice remained after 14 days and requested a blood test.
The test revealed a high level of bilirubin and our local hospital in Craigavon brought us back that night to run more tests and ultrasounds. When these results came back a few days later, we were given the shocking news that doctors thought Charlie may have the rare liver disease, biliary atresia, and would need specialist treatment.
Within days we had flown from our home in Northern Ireland to Birmingham Children’s Hospital where, after further tests, the biliary atresia diagnosis was confirmed. This was very hard to take in and, looking back, that whole time is just a blur for me and Charlie’s dad, Bailey. I had only just brought my new baby home and now I was being told he needed life-saving surgery in the form of the Kasai procedure.
Charlie had his Kasai on December 8th, all went well, and we flew back home to Northern Ireland a week later. I told myself that the operation would have cleared up all the problems, but I was so wrong. Charlie was in hospital every month with repeat episodes of cholangitis and an enlarged spleen. He underwent a transplant assessment at the end of February last year and was listed for a liver transplant on 8th March – a year ago now.
Every day we pray that we get that call. Charlie continues to be in and out of hospital with cholangitis and had to have a central line put in as his vein access began to give trouble because of the cannulas for IV antibiotics. Despite this he is such a happy little boy, he loves to dance and play with his big sister Sophia and big brother Lewis.
We are so grateful to the Blossom Ward at Craigavon Hospital. Charlie has such a good relationship with the nurses and doctors there. We also can’t thank Birmingham Children’s Hospital Ward 8 enough. They are absolutely brilliant at what they do and how quickly they act with treatment plans for Charlie. We’re very fortunate that Charlie’s consultant, Dr Gupte, flies over to Belfast for his clinic every few months which is a great help for us as it means we don’t have to leave Belfast to travel. He is an amazing man and we’re so thankful Charlie is under his care.
Having a child with liver disease certainly affects the whole family and in the early days I did make the mistake of trying to deal with everything myself. Because the condition is rare, you do feel like you’re the only ones going through it. But with two other children this isn’t easy. My daughter is only five and currently just accepts that Charlie is sick and sometimes needs to go to hospital. But for my son, who has autism, the changes to his routine while Charlie is in hospital are much more difficult to cope with. I would certainly be lost without my close family support!
Now, through the stories I’ve read on this website, I realise that there are many other families out there going through the same thing. This has been a comfort to me, and I’ve made some really good friends along the way! I talk to Niamh, who has also shared her story about her daughter, Croia, (pictured above with Charlie) and she has helped me deal with things a lot better.
So I hope that sharing our story helps others in our situation and we remain hopeful that Charlie gets his new liver this year.
