About - Maci-Louise M

Story written 2026

Maci was born to term but from day 1 didn’t feed well, we persisted for 10 weeks before taking her to our local hospital where we trialled all type of meds/feeds under the guidance of our local team and GOSH until she was 6 months old. She was then transferred to GOSH for her first Hickman line and the start of PN. Whilst on PN at this young age, she was nil by mouth and as she grew the hospital trialled many different types of feed but none seemed to work. We were in and out of the local for the next 5 years. In this time she had a stoma formed to try and help with the feeding and the stomach accepting feed but only for feed to still fail. Then they managed to get her body to accept jejunal feeding which up until January of this year had been working, not without challenges along the way. But this has now been discovered that the feed has been causing acute pain whilst running which led to chronic pancreatitis. Everything the doctors have tried, failed and Maci is now back on PN with a small amount of jejunal feed. This has a major effect on Maci and her quality of life, she rarely makes school due to lack of energy and struggles to keep up with her peers. This is a lot to restart at her age and brings a lot of uncertainty to her life once again.