“Stool School” helps parents master infant ostomy care

It came as a surprise to his parents … and his doctors. Michael Randel was born without a way to poop. The congenital condition, called an anorectal malformation, means Michael did not have a visible anal opening, something not detected on prenatal ultrasounds.

Fortunately, UC Davis Children's Hospital has the region's only dedicated pediatric colorectal surgery center, part of a network of national pediatric colorectal and pelvic learning consortium providers. Michael underwent his first operation right after birth to evacuate his stool.

Ostomy surgery diverts stool or urine out of the body when natural function is impaired. Waste exits through a stoma (the abdominal opening created by the surgery) into a wearable, disposable pouch. It is a life-saving procedure that can be temporary or permanent.

Although ostomy surgery is relatively rare overall, it is a standard surgical procedure in neonatal and pediatric care. Approximately 0.9 percent of newborns require this procedure during their time in neonatal intensive care.

Poop happens: Infant stoma care

Although ostomy care for children is similar to adults, children have specific needs based on the type of ostomy and reason for the procedure. In addition to anorectal malformations, other conditions that require ostomy in babies include Hirschsprung disease, intestinal atresia and meconium ileus.

Michael Randel's family would have to learn to care for his ostomy before they could leave UC Davis Children's Hospital.

Ostomy care is also dependent on the patient's age. Since Michael was a newborn, the care would fall to his parents, Elizabeth and Anthony Randel, along with his grandmother, Shannon Mainwaring, or "Granna" as she is affectionately known. The family was already overwhelmed by the diagnosis, let alone the surgery. Now they were panicked about the prospect of taking Michael home.

"My biggest fear was the unknown. That was the hardest thing," Elizabeth said. "Was he going to be OK? How would we handle this? It was stressful."

Since the Neonatal Intensive Care Unit at UC Davis Children's Hospital is a designated Level IV nursery (the highest possible rating) for the Sacramento region, experts provide clinical care for infants who are born prematurely, are extremely ill or require surgery. The care team includes educators who help equip parents to care for their baby at home. Just what the Randels needed.

Stool school was in session.

My biggest fear was the unknown. That was the hardest thing. Was he going to be okay? How would we handle this? It was stressful." -Elizabeth Randel, Michael's mom

Stool School: Messy moments made manageable

As part of Michael's discharge planning, clinical nurse specialist Christa Mu helped his parents and Granna learn to care for their newborn.

"I have to teach intimidating skills like infant ostomy care, which pushes families far outside their comfort zone," Mu said. "I try to make the process fun and lessen the fear."

That fear was palpable to both Mu and Granna.

"I usually arrive with my 'stool bus,' a silly cart that often sparks laughter and breaks the tension," Mu said. "It is over the top and silly, bringing a little levity to what can be a tough discussion or training session. We call it the stool bus because one of my main focuses is on teaching infant ostomy care."

Affectionately called the "stool bus", this cart helps educate parents on ostomy care and provides humor to help lighten the mood during a challenging time.

Elizabeth remembers that moment fondly.

"She rolls up in a little cart and it has a fabric drape over it. It's a school bus with a bunch of poop emojis on it," Elizabeth chuckled. "She 'picks up' me and Anthony and my mom and we go to stool school."

Hands-on class in handling No. 2

When they arrive at "school" - which is actually a classroom in the NICU - the Randels find a little doll and tools to care for their own baby's ostomy. Ostomy care requires keeping the stoma and surrounding skin clean and properly changing the pouching system to prevent leaks and skin irritation.

"We laid the baby down and Christa taught us how to clean the area around the stoma. Then we put some skin protectant around it and a sticker goes on top of that and then the bag goes on top of that," Elizabeth said. "We learned the ropes before we tried it on Michael. Christa was so patient and kind."

I have to teach intimidating skills like infant ostomy care, which pushes families far outside their comfort zone. I try to make the process fun and lessen the fear." -Christa Mu, UC Davis Children's Hospital nurse specialist

Once the Randels were ready, Michael's parents - with Granna in tow - moved to his bedside.

"Gosh. We were sweating bullets. You felt rushed because poop can happen at any time. It was just his intestines. There's no sphincter so he didn't have to push. It just came out," Elizabeth recalled. "A lot of times there was leakage. We were not fast or proficient, so it was stressful in the moment."

But they did it.

"Quickly, the Randels became full-on ostomy pros. They even showed up one day with poop-emoji pens for me," Mu chuckled. "I remember laughing because it felt like such a perfect snapshot of who they were by that point. What started as something scary and overwhelming had turned into something we could joke about together. In those moments the fear softens and makes learning more manageable."

Elizabeth and Anthony master ostomy care thanks to nurse specialist Christa Mu and the "stool school."

From panic to poop pro

Michael improved during his 24 days in the NICU, while Shannon saw her daughter and her son-in-law become more hopeful before her eyes.

"As they got more comfortable and familiar with the procedures around changing the ostomy, there was more and more excitement about Michael coming home," Shannon said. "You could really chart the joy."

When Michael was finally discharged, mom, dad and Granna felt prepared to care for his ostomy, thanks to the "education" they received and the personal care they experienced.

"Christa was 100% our kind of person. We can't thank her enough for the compassion she had for what we were going through," Elizabeth said. "She just understood us."

Nurse specialist and ostomy educator Christa Mu holds baby Michael who was able to go home after 24 days in the NICU.

So much so that Mu has incorporated the Randels gift of "poop pens" into stool school. She keeps poop pens at her desk and often gives them to families just starting stool school. Mu tells them it came from a family who once stood exactly where they are now, at the very beginning of their ostomy journey.

"It's a small gesture, but it says what I sometimes can't put into words: this is scary, but you're not alone and it won't always feel this hard. The Randels showed me how fear can slowly turn into confidence, and how resilience often looks like showing up, learning anyway and finding a reason to laugh along the way."

Despite being pooped out learning about poop, the Randels encourage other parents not to panic if they find themselves in a similar position.

"Ostomy care was quite the education, but in the end, we became experts and Christa became like family," Elizabeth said. "It was a really special connection. That kind of support is so important. You've got to just let go and trust in yourself. You'll get there."