Lydia’s Story

Back in 2013, when Lydia was just a few hours old, she was rushed to Alder Hey for an emergency operation. She had been 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. Even after the operation Lydia struggled for some time because her bowels didn’t work very well, and she had to return to Alder Hey have another operation a few months later.

Three-quarters of her intestines were removed, leaving Lydia with the bare minimum needed to absorb the food she needed for healthy growth and development. Lydia was fed intravenously with a drip solution because she was unable 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 including a feeding tube fitted directly into her stomach: eventually the drip feeding 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 any expectations I had. 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 eight 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 regular medication. She is a very fit and happy little girl who is academically gifted, with two older sisters who love her very much. She enjoys going to gymnastics twice a week and is even learning to play the piano and the drums!

Clare said “The new enhancements to the neonatal ward 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.”