86: The Hirschsprung’s Hour with Tom Richard & guest Zandra Thomas

86: The Hirschsprung’s Hour with Tom Richard & guest Zandra Thomas

What can we learn from those who have battled addiction? This time, the focus shifts to a different kind of daily struggle: parenting a medically complex child living with Hirschsprung’s disease, autism, epilepsy and a rare genetic mutation. Host Tom Richard chats with guest Zandra Thomas, who talks through her son Zacari’s story from his first days in hospital.

She recalls green bile, a swollen tummy and the terrifying moment when “they had to bag him” because he couldn’t breathe on his own. Emergency transfers, heart problems, blood clots, and weeks in intensive care paint a vivid picture of just how intense those early months were. Zandra explains repeated surgeries, learning bowel irrigations at home, and the emotional rollercoaster of pull-through operations that led to complications and, eventually, a colostomy.

Far from being a setback, the ostomy becomes the thing that finally brings Zacari comfort and a better quality of life. As she puts it, having the bag has been “a blessing” while he also manages autism and nonverbal communication. You’ll hear how her nursing background helps her spot problems early, but also how humbling it is to be on the parent side of the hospital bed.

She talks about the relief of getting labels like autism and the eEF1A2 genetic mutation, saying a diagnosis takes away the feeling that she’s “just thinking things are wrong”. Social media and online groups come up too: Zandra shares everything from ostomy leaks to hospital stays, so other parents and adults feel less alone. “Talk about it. Share it,” she says.

“Otherwise, people won’t know.” This episode suits parents of medically complex kids, anyone affected by Hirschsprung’s or ostomies, and those who just want an honest look at resilience, fear and hope stitched together. It might leave you asking: how would you cope if your child’s life depended on you trusting your gut?