Seven year old Lydia was born with a very complex case of Gastroschisis, a condition where the intestines extend outside of the abdomen through a hole next to the belly button. After the emergency operation, Lydia struggled for some time because her bowels didn’t work very well, and a few months later she had to have another operation. Three-quarters of her intestines had to be removed, leaving Lydia with the bare minimum needed to absorb the food she needed to grow and develop normally. Lydia needed intravenous feeds with a drip solution called Total Parental Nutrition (TNP). She was not able to be fed by mouth to start with – all her food was going straight into her blood stream and nothing into her stomach. It took quite a while for her to be able eat and drink the way a baby usually does.
Lydia had many operations, blood transfusions and procedures. She had a feeding tube fitted directly into her stomach and eventually the TPN could be stopped. She was in hospital continuously for 9 months; 4 of these on the neonatal ward. Lydia's mum, Clare, said "The care both Lydia and myself received on the Neonatal ward at Alder Hey far exceeded anything I ever imagined. Not only did I fully trust the nurses with the care of something so precious as my baby, every day and every night I was comforted by their care and expertise.’"
Fast forward seven years, and Lydia can now eat normally, although she still needs extra, high calorie meals three times a day through her feeding tube which is now a much more convenient ‘button’. Otherwise, Lydia has no medical needs - not even any regular medication. She is a very fit and happy little girl (very little – only in age 4 clothes although she is 7 years old) who is very clever academically. She is learning to play the piano and enjoys going to tumbling and gymnastics twice a week. Lydia has two older sisters who love her very much.
Lydia’s mum continued “The new enhancements to the neonatal unit sound incredible and would have made such a difference to us as a family. Lydia has two older sisters who love her very much. I felt so guilty leaving Lydia when I went to see my two girls at home and vice versa. Having them there with us more, in our own child friendly private area, would have really helped with Lydia’s recovery. The experience with Lydia was tough but it made us all very strong as a family. –I felt blessed we had a happy ending and that Lydia was able to come home and get to grow up without any serious medical conditions.”
Lydia is featured in our new Neonatal Campaign and is part of the JOHNSON’S® Baby promotion with special packs available in retailers for a limited period. Our Neonatal Campaign is raising funds to help create a wonderful environment for parents in our new Surgical Neonatal Unit at Alder Hey, allowing families to stay even closer to their newborns during their care.