89: The Hirschsprung’s Hour with Tom Richard - Episode 8989: The Hirschsprung’s Hour with Tom Richard - Episode 89
UK Health Radio Podcast
Tom Richard talks with Andrea about her three-year-old son’s rare total colonic Hirschsprung’s, from missed early signs and emergency surgery to living with stomas, trauma and complex ongoing care. The conversation focuses on parental instinct, medical advocacy, and the daily realities of managing a child’s severe gastrointestinal condition.
44:42•7 Jul 2026
A Miracle Baby, Missed Signs and Stomas: Andrea’s Hirschsprung’s Journey
Episode Overview
- Parental gut feelings about a baby’s health can be crucial, even when early tests and professionals say everything looks normal.
- Total colonic Hirschsprung’s may present with feeding difficulties, no meconium, severe constipation and bile-stained vomiting in the first weeks of life.
- A single observant nurse recognising a specific smell led to the right specialists and likely saved Andrea’s son’s life.
- Life with infant stomas involves intense practical work, financial pressure from limited insurance cover, and high emotional strain on parents.
- After pull-through surgery, ongoing management with medication, careful diet, and attention to allergies is key to keeping bowel symptoms under control.
“He stops and he's like, I have no idea how your son made it this long. It is a miracle that he is alive.”
How do people cope with the challenges of staying sober when life already feels like one long medical emergency? This Hirschsprung’s Hour episode shares a raw family story that many parents of medically complex kids will recognise. Host Tom Richard chats with Andrea, mum to a three-year-old boy with total colonic Hirschsprung’s – an extremely rare form of the condition.
She walks through his story from a seemingly straightforward pregnancy and birth trauma, to missed warning signs like no meconium, constant feeding struggles and days without poo that were repeatedly brushed off as “normal”. Things escalate when her son starts projectile vomiting, then bringing up bright green bile.
A rural doctor honestly admits she’s out of her depth, a helicopter transfer is arranged, and after hours of confusion, a passing nurse recognises the smell of his vomit and says, “You need to speak to a GI surgeon immediately.” That moment changes everything. Andrea shares how biopsy results confirm Hirschsprung’s, and surgery reveals something far more severe.
As she recalls the surgeon saying, “I have no idea how your son made it this long… it is a miracle that he is alive,” you’ll feel just how close they came to losing him. From there, the episode moves through life with stomas, constant bag changes, harsh insurance limits, and the impact on sleep, anxiety and marriage.
Andrea describes learning complex stoma care overnight, planning a wedding, then facing a huge pull-through surgery while seven months pregnant, supported by a skilled team using robotic assistance. She also talks about life after surgery: managing rapid-output bowels with regular antibiotics, strict diet changes, a newly diagnosed dairy allergy, and the challenge of helping a toddler accept fruits and vegetables he’s barely seen before.
Anyone dealing with rare conditions, hospital trauma or parenting under constant stress will find comfort in Andrea’s honesty and might walk away asking: how can you better trust your instincts when you know something’s wrong?
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