Meet Lydia


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 this year's Alder Hey and JOHNSON’S® fundraising partnership. In 2021 JOHNSON’S® pledged to support Alder Hey’s Surgical Neonatal Appeal, donating £83,733, which will fund one of the Family Integrated Care Rooms in the new Surgical Neonatal unit so parents and babies can stay together in a private and comfortable setting to bond as a family whilst still accessing expert care from clinicians. This year, JOHNSON’S® is continuing its partnership with Alder Hey, committing to fund an additional Family Integrated Care Room on the ward, with the ambition to raise as much as possible to support Alder Hey in our shared mission to help keep families together in neonatal care.

The new Surgical Neonatal Unit at Alder Hey is a joint project between Alder Hey and Liverpool Women’s NHS Foundation Trust.

The unit will offer 22 neonatal cots and will feature 18 individual family rooms where parents can be alongside their poorly new-borns whilst they’re receiving expert care, a first for the UK.

The Charity Appeal is providing ‘over and above’ enhancements and equipment for both the clinical space and family areas, elevating the new Neonatal unit from a facility that provides families with a safe and secure environment for their new-borns, to a truly world-class facility that wraps-around families with the most vulnerable babies. Staff from Liverpool Women’s Hospital will work alongside Alder Hey staff at the new Surgical NICU ensuring that poorly babies are transferred between the two hospitals as little as possible.

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