87: The Hirschsprung’s Hour with Tom Richard& guest Stephanie Luster shares her daughter’s journey…87: The Hirschsprung’s Hour with Tom Richard& guest Stephanie Luster shares her daughter’s journey…
UK Health Radio Podcast
Host Tom Richard talks with mum Stephanie Luster about her daughter Ayla’s complex journey with Total Colonic Hirschsprung’s Disease, from NICU and stomas to pull-through surgery and recurrent enterocolitis. The conversation focuses on faith, family support and the ongoing challenges of raising a child with a rare condition.
43:42•23 Jun 2026
Faith, Family and Hirschsprung’s: Stephanie Luster on Her Daughter Ayla’s Story
Episode Overview
- A rare diagnosis like Total Colonic Hirschsprung’s can turn a routine birth into a steep learning curve where parents quickly become condition experts.
- Strong faith and previous experiences with loss and mental health treatment can give people tools to cope with acute medical crises.
- Community and family support make a huge difference, from sitting through long surgeries to stepping in when exhausted parents can’t see solutions.
- Enterocolitis and strictures may recur even after major surgery, so early recognition, antibiotics, irrigations and diet changes are key parts of ongoing care.
- Parents sometimes need to challenge medical professionals who are unfamiliar with Hirschsprung’s and insist on appropriate treatment or seek specialist teams.
“You want a playbook… and I just had her physician be honest with me and say, there’s still stuff that we’re learning about this disease.”
Get ready to be moved by real-life accounts of what happens when a routine birth turns into a rare and complex medical story. This Hirschsprung’s Hour instalment follows host Tom Richard talking with mum Stephanie Luster about her daughter Ayla’s journey with Total Colonic Hirschsprung’s Disease. You’ll hear Stephanie recount the shock of going from a smooth third delivery to a NICU admission within hours, green bile, frantic Googling, and finally a life-changing diagnosis she’d never heard of before.
She talks frankly about handing over a five‑day‑old baby for six hours of surgery, learning to manage an ileostomy and TPN at home, and the emotional toll of feeling like she had to become an instant expert in a condition many doctors barely recognise. Faith is a constant thread, with Stephanie explaining how her Christian beliefs and previous struggles with miscarriages and mental health gave her tools to cope.
She also credits an incredibly close family and wider community for carrying them through endless hospital stays, frightening enterocolitis episodes, strict food routines, and the brutal aftermath of pull‑through surgery. One of the standout moments is her honest admission: “There was a moment where I was like, what did I do? Were we supposed to do this pull-through?” This isn’t a neat before‑and‑after story; Ayla is still on rotating antibiotics, and enterocolitis remains a risk.
But there’s humour, grit and a lot of hope as Stephanie talks about future trips, letting a toddler still enjoy chicken nuggets, and her prayer that one day all of this will just be a hazy memory for her daughter. For anyone parenting a child with complex health needs, living with Hirschsprung’s, or supporting someone who is, this conversation offers raw honesty, practical lived experience, and reassurance that you’re far from alone.
How might Stephanie’s mix of faith, family and sheer stubborn love help you think about your own support system?
Do you want to link to this podcast?
Get the buttons here!
More From This Show
The latest episodes from the same podcast.
Related Episodes
Similar episodes from other shows in the catalogue.