I am a mum of a little boy with Hirschsprung's Disease and I'm working hard to raise awareness of Hirschsprung's Disease, raising a baby with a stoma and the challenges that parents face while advocating for a child with medical needs.
Ffredi was born in April 2024, after a few days he was rushed from our local hospital to Alder Hey Children's Hospital in Liverpool with suspteced sepisi and a bowel obstruction. After a 10 day stay in Neonatal ICU, he was diagnosed with Hirschsprung's Disease.
Hirschsprung's Disease is a rare congenital disease in which nerves are missing from parts of the intestine. For Ffredi and other children with Hirschsprungs disease, their large intestine doesn’t work in the way it should, meaning that the bowel can become blocked and result in a very serious infection.
The disease affects around 200 children per year - only 170 last year, and 20% have Long Segment Hirschsprung’s Disease, it’s a pretty small pool of people who are experiencing this exact thing. So it’s important to me that others find us and our story so they feel less alone.
After 4 months of bowel washouts at home, Ffredi returned to Alder Hey for a surgery to remove the affected bowel and reconnect it. In surgery, it was discovered that Ffredi's disease was more severe than expected and the affected bowel was removed but instead of reconnection, Ffredi had 3 stomas formed. An ileostomy for waste and 2 further stomas, keeping a small piece of his large intestine alive so it can be potentially used in the future.
Nobody expects to be doing this. Disability parenting. I’d never even heard the term until a few weeks ago, but it really is our reality. So while it’s the only thing on my mind, and an outlet to share our experience - because it’s a lonely one - this is what I’m sharing.
There is nothing more terrifying than having your baby taken to special care, transferred in a neonatal ambulance, to spend days in intensive care. To hear words you’ve never heard before, to be sent home doing a procedure to keep your child healthy. To not know what’s normal or illness, to be 24/7 looking for signs of infection. To send your child to theatre twice, to see a stoma for the first time, to see your child poorly, to have conversations day after day about the same thing. To live it through every phone call or message you send. To go home when you’ve been around professionals all day and night. To argue for your child’s needs. All of it is pretty terrifying.
Maybe next time it happens to someone else, they’ll feel a tiny bit less alone because we‘ve been through it and shared our story. Maybe I feel a tiny bit less alone each time I write about our experience.
Maybe next time someone is diagnosed with Hirschsprung’s disease, you’ll remember Ffredi’s story.
Currently we are navigating life with a stoma, advocating for Ffredi's care, dealing with the immense load of medical admin and finding our way - sharing lots of our journey on social media.
I am actively sharing our journey @livewithgeorgina on Instagram and open to writing and speaking opportunities in 2025.
I joined Tom for an episode of his podcast to talk about the first 5 months of juggling motherhood and being a business owner, Ffredi's diagnosis of Hirschsprung's Disease with the triumphs and challenges that have followed.
