103: The Hirschsprung’s Hour with Tom Richard - Episode 103103: The Hirschsprung’s Hour with Tom Richard - Episode 103
UK Health Radio Podcast
Tiffany talks through her son Arlo’s complex journey with Long Segment Hirschsprung’s Disease, from delayed diagnosis and major surgery to ongoing complications and repeated Botox treatments. The conversation highlights parental instinct, family involvement and cautious hope for Arlo’s future independence and toilet training.
40:43•10 Nov 2026
Trust Your Gut: Tiffany Shares Arlo’s Long Segment Hirschsprung’s Journey
Episode Overview
- Trusting parental instincts is crucial when something feels wrong, even if initial medical reassurance says otherwise.
- Pull-through surgery is life-saving but does not cure Hirschsprung’s; ongoing bowel dysmotility and management are often needed.
- Repeated Botox rounds may not work the same for every child and can require rethinking long-term care plans, including possible stomas.
- Dehydration and feeding difficulties can quickly worsen bowel issues, making fluid intake and laxative management key.
- Bringing siblings and family into the care process, when appropriate, can ease daily practical challenges and reduce fear around medical procedures.
“"If you feel something’s wrong. Trust your gut."”
What are the common struggles and victories in addiction recovery? This episode of The Hirschsprung’s Hour on UK Health Radio shifts the focus to parenting and medical resilience, following Tiffany as she talks through her son Arlo’s intense first 16 months of life with Long Segment Hirschsprung’s Disease. You’ll hear how Arlo was born prematurely, seemed fine at first, then began grunting nonstop and stopped passing stool without digital stimulation.
Tiffany repeatedly raised concerns, only to be told, "Some breastfed babies just don’t poo as often," even when Arlo was later supplemented with formula. One of the standout moments is host Tom Richard’s recurring message: "If you feel something’s wrong. Trust your gut." That instinct led Tiffany back to hospital, where biopsies finally confirmed Hirschsprung’s.
The conversation walks through Arlo’s Swenson pull-through surgery, a nine to ten hour ordeal that Tiffany calls "the worst time of our life" and yet also a huge milestone when he started pooing on his own within 36 hours. From there, the pair talk frankly about complications: enterocolitis, recurring abscesses, fistula surgery, and five rounds of Botox that haven’t brought the long-term relief the family hoped for.
Tiffany also shares how her background working with quadriplegic and paraplegic clients unexpectedly helped her handle stomas, bowel irrigations, and manual disimpactions at home, and how their seven-year-old daughter calmly learnt to help with care, turning an overwhelming situation into a shared family effort. Genetics, heart issues (ASD and VSD), dehydration, laxatives, and wildly different journeys of three Hirschsprung’s children at the same hospital all come up, showing just how varied this condition can be.
Through it all, Tiffany keeps looking ahead, hoping Arlo will grow into more independence and one day tackle things like pelvic floor therapy and toilet training on his own terms. If you’re supporting a child with complex medical needs, this honest chat might leave you asking: how much could trusting your gut change your story too?
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