Ava's journey with Currarino Syndrome - Anorectal Malformation

AVA'S STORY

Ava's symptoms started at 6 months old, after many trips to the GP with no answers, they took Ava to ED. It eventually led to a diagnosis of Currarino Syndrome - Anorectal Malformation, by her surgeon Dr Askar Kukkady.

Ava went in for surgery, where they were informed that she would need to have a Colostomy bag fitted. They were unaware of what this would mean for Ava & a few weeks later, Ava had a big operation - Anal Plasty.

This condition is rare, so there were months of limbo, before having the Colostomy Bag reversed. This began a string of major surgeries with the Colostomy bag being refitted & then again having it reversed, before trialling Botox & a Mickey button.

These were unsuccessful & Ava faced surgery to have her 3rd Colostomy bag fitted. After over 20 surgeries, this was devastating for Ava & the whole family.

This year has been tough as Ava was admitted into hospital on the 8th June for a bowel resection, which did not go to plan & resulted in a 8 hour surgery. A week later Ava was discharged, but after being home for only 4 days & declining in this time, she had to return to ED. After further investigation, they found that the Ava's bowel was leaking into her pelvis.

She then was on a TPN bag for 3 weeks, but her bowel still did not heal & she had to have another surgery to fit an ileostomy bag, only for that to fail & be redone.

They are now 10 weeks into their most recent hospital stay and awaiting further testing to decide what's next for Ava.