101: The Hirschsprung’s Hour with Tom Richard - Episode 101101: The Hirschsprung’s Hour with Tom Richard - Episode 101
UK Health Radio Podcast
Helen recounts her adult son’s long, complicated journey with Hirschsprung’s disease, from dangerous infancy and family upheaval to international powerlifting success. She highlights the strain on siblings, the importance of parental advocacy and the practical hope offered through support networks like A Bear Named Buttony.
42:40•27 Oct 2026
From Sickly Baby to International Powerlifter: Helen’s Hirschsprung’s Story
Episode Overview
- Hirschsprung’s disease can initially be mistaken for constipation, so parents’ observations and persistence are vital.
- Chronic childhood illness affects siblings deeply, and their needs and emotions deserve active support.
- Keeping detailed records of operations, admissions and reports can help clinicians understand complex histories, especially during transition to adult care.
- Trusting parental instinct about when a child is truly unwell, while also recognising the limits of self-research, can guide better decisions with medical teams.
- Even with lifelong gut issues and multiple surgeries, it may still be possible to reach ambitious goals, as shown by Helen’s son competing internationally in powerlifting.
“"If we'd known with this sickly baby that we were trying to keep alive that he would go on to achieve this level of sporting prowess, that would have given us a lot of hope."”
What makes a recovery story truly inspiring? Tom sits down with Helen to talk through her adult son’s complex history with Hirschsprung’s disease, from a worrying start in rural Scotland to life as an international powerlifter. Helen walks through those early days of bright green vomit, missed meconium and the sudden realisation of “the seriousness of the situation” once they reached a children’s hospital.
She talks about emergency surgery, necrotising enterocolitis, repeated bouts of illness and the relentless demands of caring for a very sick baby while raising two young daughters and holding down careers. You’ll hear how the whole family felt the strain: siblings sent to camp without a coat, left waiting after swimming lessons, and holidays cancelled when their brother was suddenly admitted to hospital.
Yet Helen also shares the unexpected positives, including both daughters going on to become doctors after years of seeing hospitals from the inside. A big thread through the conversation is parental advocacy. Helen describes poring over the standard Hirschsprung’s textbook, collecting every hospital letter and biopsy report, and writing carefully crafted letters to surgeons and gastroenterologists.
Her message to clinicians is clear: “please listen to the parent… this is a really unusual disease and it is not constipation.” The episode follows her son’s rocky transition to adult care, unresolved nausea, a hard‑won second opinion and the moment the family accepted that more surgery wasn’t the answer.
From there, Helen paints a vivid picture of her son’s achievements: black belt in judo, then international powerlifting, thriving in a supportive sporting community despite multiple laparotomies and ongoing gut issues. Helen also mentions her involvement with the charity A Bear Named Buttony, which supports children with stomas, adding another layer of hope and practical kindness.
If you’re parenting a child with complex health needs, could this story be the reminder you need that there really can be light at the end of a very long tunnel?
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