Alice's quilt    (Quilt Open)

Child Interests

Alice loves princesses especially Belle, Rapunzel, Cinderella and Ariel . She’s into pretty much everything Disney - Inside Out, Encanto, Mulan and classic Disney such as Bambi and Alice in Wonderland.

She also likes fairies and unicorns and her favourite colour is pink.

Biography

During my pregnancy with Alice it was picked up something was wrong with her bowel and she would need NICU at birth. She was born at 35+5 due to PPROM, her condition caused excess fluid leading to the premature birth. After birth Alice was treated as possible bowel obstruction and had surgery at 3 days old. She hadn’t obstructed but was given stomas for bowel rest.

At a week old the genetics and gastro team were contacted and they saw Alice and diagnosed her with sodium losing enteropathy, a condition her dad also has. Her condition is caused by a mutation to the GUCY2C gene.

Alice had a rocky journey through NICU, needing her stomas repaired and a surgery to repair an obstruction where her bowel was rejoined. At 16 weeks she was moved to paediatrics and we began our TPN journey. It was decided TPN would be the best to help her grow and give her the salts needed to balance what she loses with her condition. Alice finally came home after 222 days and by some miracle came off TPN by 1 year old.

In the following years Alice has undergone more surgery on her bowel to repair previous damage and she’s had many admissions when she’s been unwell as she drops her salts quickly and becomes easily dehydrated.

On an admission for rotavirus in Sept 2022 the medical teams really struggled for vein access, even with ultrasound they couldn’t cannulate her. It was decided it was in Alice’s best interests to give her central access again. The following September Alice had a port fitted, this allows her teams access to her blood quickly and they can easily administer fluids and medications when she’s unwell.

She’s now had her port nearly a year and it’s been great! Alice’s mental health had been at a bad point and she would self harm after admissions/ appointments, she found the cannulations particularly tricky, but now her port is one needle and the medical teams have all the access they need. They even used it to give her anaesthetic for a recent tonsillectomy.

Alice’s condition is for life and all the bowel surgeries have left her with short bowel too. No one can tell us what the future will be like and even in her 5 years some years have been a lot harder than others.

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Card

Stitched by: Sandra