Sophie and her partner Jordan’s first year with daughter, Luna, has been a rollercoaster.
We first became aware that something was wrong when Luna was two weeks old. Our midwife was concerned about her jaundice and referred her to the prolonged jaundice clinic where she had bloods taken. Just a few hours later I had a phone call to say that something was wrong with her liver.
We were then in and out of the Princess Royal Hospital in Telford for a few days for tests and that’s when we first heard the term biliary atresia. It was not a condition we had ever heard of and at that point we didn’t even know that this meant our daughter had a liver disease. When it was confirmed, Luna had her Kasai operation and that’s when we first heard about CLDF.
The main benefit to us of CLDF was being able to access information about Luna’s condition and its implications, not just for ourselves, but for family members who want to understand what is wrong with Luna.
Since her Kasai, Luna has been constantly in and out of hospital and we recently spent three months in Birmingham Children’s Hospital where she was listed for transplant. However after a lot of intervention, transfusions and NG feeding, she stabilized and has been taken off the list at least for now.
It’s early days for us with childhood liver disease. We feel we are still on a massive learning curve and we don’t know what is around the corner. However, it’s good to have somewhere to turn for trusted information and we have really learned to cherish the good days.
