93: The Hirschsprung’s Hour with Tom Richard - Episode 9393: The Hirschsprung’s Hour with Tom Richard - Episode 93
UK Health Radio Podcast
Jodie recounts baby Libby’s journey through Hirschsprung’s Disease, stoma surgery and a Mowat-Wilson Syndrome diagnosis, sharing both fear and joy. The conversation highlights parental resilience, everyday milestones and the realities of raising a child with rare, complex conditions.
40:46•18 Aug 2026
Smiles, Stomas and Strength: Libby’s Hirschsprung’s Story
Episode Overview
- Early pregnancy scan results and heart concerns can be the first sign of complex conditions such as Hirschsprung’s Disease.
- Delays in newborn pooing, severe tummy swelling and feeding problems can be critical warning signs that need urgent medical attention.
- Parents can learn stoma care even if it feels impossible at first, and gain confidence through practice and necessity.
- A diagnosis like Mowat-Wilson Syndrome may bring grief and fear, yet focusing on daily progress and happiness can help families cope.
- Big medical choices, such as keeping a permanent stoma, involve weighing future complications against what offers the child the most stable life.
“You just never know what you're capable of until you're pushed into the situation where you have to.”
What remarkable journeys have people faced head-on against rare childhood conditions? This conversation on UK Health Radio’s Hirschsprung’s Hour follows Jodie as she shares the rollercoaster early months of her daughter Libby’s life, from a worrying 12-week scan to multiple diagnoses, major surgery and an unexpected genetic finding. You’ll hear how a routine pregnancy suddenly shifted when doctors spotted a raised nuchal translucency and a hole in Libby’s heart.
Jodie talks through the shock of being labelled a high-risk pregnancy, the reassurance from specialists, and then the frightening reality after birth when Libby couldn’t feed, hadn’t passed meconium and her tiny body became dangerously distended. Her account of handing over a three-day-old baby for life-saving stoma surgery is raw and very human, from signing herself out of the post-labour ward to be by Libby’s side to describing herself going into “lion mode”.
She’s candid about fainting at the sight of the stoma at first and then, months later, “pretty much changing stomas in my sleep”, using that shift to show how much parents can do when they have no choice. The episode also covers Libby’s diagnosis of long-segment Hirschsprung’s Disease alongside Mowat-Wilson Syndrome, and the emotional punch of being told her stoma may be permanent.
Jodie explains how she and her husband moved from “a very dark, difficult hole” to focusing on giving Libby “the best life possible”, celebrating every smile, roll and tiny milestone. Along the way, the chat opens up taboo topics like poo, stomas and adult continence with warmth and humour, while acknowledging the loneliness of rare conditions and the constant emotional triggers that linger after long hospital stays.
If you’re parenting a child with complex needs, living with Hirschsprung’s, or just want to understand what families in this situation face, this honest, hopeful story might leave you asking: where might you be stronger than you think?
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