82: The Hirschsprung’s Hour with Tom Richard - Episode 82

82: The Hirschsprung’s Hour with Tom Richard - Episode 82

What remarkable journeys have people faced head-on against addiction? On this occasion, the focus shifts to a different kind of lifelong condition, as Tom Richard sits down with Sadie to talk through her five‑month‑old daughter Sophia’s experience of total colonic Hirschsprung’s Disease. Sadie walks through a supposedly routine birth that very quickly turned into a medical emergency.

From the first gurgles and yellow vomit on the day Sophia was born, she kept saying, “I knew that something wasn’t right,” yet felt repeatedly dismissed as staff blamed fluid from a fast delivery and encouraged her to keep feeding a baby who could only vomit.

Her account of watching Sophia turn orange, develop tiny cracks on her hands and feet from dehydration, and eventually choke with “her eyes… rolled into the back of her head” is as harrowing as it is precise. The conversation tracks the move to a specialist hospital in London, Ontario, the battery of tests, inconclusive biopsies, and finally the stoma surgery that confirmed long‑segment/total colonic Hirschsprung’s.

Sadie describes learning to manage an ileostomy on a tiny baby, dealing with bag leaks, prolapses, and the lack of baby‑sized products, all while chasing weight gain and trying to snatch moments of ordinary newborn life. Faith and advocacy run through her story. She admits she was angry at first, but later says, “God gave her to me for a reason,” and talks about praying harder than ever.

She also shares how joining Hirschsprung’s support groups has pushed her to speak up for specialist colorectal care and to raise funds for Sophia’s future pull‑through surgery. This conversation suits anyone living with rare conditions, parents juggling medical trauma, and people who want honest talk about listening to your gut when you know something is wrong. It may leave you asking: how often do parents’ instincts get ignored in hospitals, and what might change if they didn’t?