94: The Hirschsprung’s Hour with Tom Richard - Episode 9494: The Hirschsprung’s Hour with Tom Richard - Episode 94
UK Health Radio Podcast
Lex talks through her son Frankie’s complex Hirschsprung’s journey, from NICU and 14 surgeries to TPN, central lines and a major pull-through. The conversation also covers parental trauma, genetic uncertainty and how sharing their story online has grown into powerful advocacy and community.
44:38•1 Sept 2026
Frankie’s 14 Surgeries: A Mum’s Candid Hirschsprung’s Story on UK Health Radio
Episode Overview
- Early recognition of unusual symptoms and pushing for appropriate care can be critical when babies fail to stool or gain weight.
- Central lines and TPN may be life-saving but carry serious infection risks, making careful monitoring and swift action around fevers essential.
- A pull-through surgery can significantly change feeding and growth, even when only a portion of the colon remains.
- Parent-led advocacy, including challenging medical teams and sharing experiences online, can create both better care and vital community support.
- Children with Hirschsprung’s may show high pain tolerance and behavioural impacts, making long-term emotional and psychological support as important as physical care.
“Above all else, I don’t have big hopes and dreams for Frankie beyond being happy and content with who he is and knowing that he’s perfect the way he is.”
Curious about how others navigate their sobriety journey? This time the focus shifts to a different kind of medical battle, as UK Health Radio’s Hirschsprung’s Hour shares a raw, emotional story that many medically complex families will recognise instantly. You’ll follow Lex as she talks through her son Frankie’s intense start to life with Hirschsprung’s disease, short gut and intestinal failure.
Born full-term and apparently healthy, Frankie rapidly became unwell, ending up in NICU, life-flighted to a children’s hospital and officially diagnosed by day four of life. From there it’s a whirlwind: an ostomy at five days old, TPN, feeding struggles, and a staggering 14 surgeries in his first year. Lex doesn’t hold back about the trauma of repeated hospital admissions, clashes with doctors, and being judged as a parent.
She explains how a note in Frankie’s chart now reads "mother of child has medical trauma", and how procedures like dilations and irrigations have taken a toll: "Just, just fuck them... there's not enough money in the world that makes it worth it." Yet the episode keeps a thread of humour and warmth, especially when she laughs about Frankie dragging his TPN and antibiotic balls around instead of using his wheeler.
Host Tom keeps the conversation grounded, highlighting how varied Hirschsprung’s experiences can be and why absolutes rarely apply. They touch on genetics, research studies into behaviour and trauma, and the strange combination of huge pain tolerance and deep emotional impact in these kids. One of the most uplifting parts is Lex’s social media advocacy. What started as a "diary" in her words has turned into community and support: "It started as like a diary...
and it became advocacy." Behind all the medical detail sits a simple hope: that Frankie grows up knowing "there's not a damn thing wrong" with him. If you’re living with complex health issues in your family—or supporting someone who is—could this fierce, funny, honest story be the perspective you need today?
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