There’s something incredibly special about caring for babies with ostomies; the tiniest ostomates often steal my heart, and as a nurse, they’ve quickly become some of my favorite patients to care for.
Hearing that your child needs an ostomy can be overwhelming, especially if you’re not familiar with what that means or what to expect. Whether your child is a newborn, toddler, or school-age, caring for a pediatric ostomy can feel daunting at first, but you’re not alone.
This post covers the most common reasons children may need an ostomy and provides a gentle introduction to pouching and care for tiny stomas.
Why Do Children Need Ostomies?
Children may require a temporary or permanent ostomy for various reasons. Some are born with congenital conditions, while others may require surgery due to illness, trauma, or complications from earlier medical procedures.
Here are some of the most common causes of pediatric ostomies:
🔹 Hirschsprung’s Disease
A condition where nerve cells are missing from parts of the intestine, causing a blockage. A colostomy or ileostomy may be placed to allow stool to bypass the affected area.
🔹 Necrotizing Enterocolitis (NEC)
A serious intestinal disease that affects premature infants. If part of the bowel dies or is damaged, a temporary ostomy (often an ileostomy) may be needed.
🔹 Anorectal Malformations
Children born without a fully developed anus or rectum may need a colostomy while awaiting further reconstructive surgery.
🔹 Inflammatory Bowel Disease (IBD)
Though less common in young children, some older pediatric patients with severe Crohn’s or ulcerative colitis may need an ostomy to manage symptoms or as part of surgical treatment.
🔹 Trauma or Infection
In rare cases, severe injury or infection may damage the intestines, requiring an ostomy to allow healing.
Types of Pediatric Ostomies
- Colostomy – the large intestine is brought to the surface of the skin.
- Ileostomy – the small intestine is brought to the surface.
- Urostomy – urine is diverted to an opening on the belly (typically less common in very young children).
In the pediatric population, a mucus fistula is often created alongside an ostomy, especially in cases where a segment of the bowel is temporarily bypassed but will be reconnected later. It provides a way for mucus and secretions from the unused bowel segment to exit the body, preventing distension, infection, or discomfort.
This is commonly seen in conditions like:
- Hirschsprung’s disease
- Necrotizing enterocolitis (NEC)
- Anorectal malformations
The mucus fistula allows the distal bowel to stay decompressed and healthy until future reconnection (referred to as “stoma reversal” or “pull-through surgery”) can be performed.
Here is a video demonstrating how to pouch a stoma with a mucus fistula.
Basic Pouching Tips for Pediatric Ostomies
Pouching for pediatric stomas comes with unique challenges: soft bellies, frequent movement, and delicate skin. But with the right techniques, you can develop a routine that works for your child and gives you peace of mind.
🍼 1. Use Pediatric-Specific Supplies
Look for pediatric-sized pouches and skin barriers. Brands often offer:
- One-piece or two-piece systems
- Soft convexity options for retracted stomas
- Mini-pouches with smaller adhesive surfaces
Your WOC nurse can help match your child’s stoma size and output type with the right product.
🧼 2. Gently Clean the Skin
- Use warm water and soft cloths; no soap needed.
- Avoid wipes with alcohol or fragrance.
- Always pat dry before applying the new pouch.
✂️ 3. Cut the Barrier to Fit
- Trace the stoma size on the back of the barrier.
- Cut just slightly larger than the stoma (about 1/16″ to 1/8″).
- Re-measure every few days for newborns, as their stoma size can change quickly.
🩹 4. Protect the Skin
- Use adhesive remover wipes or spray when removing the appliance.
- Apply a skin barrier wipe or spray only when the skin is broken and weepy.
- If the skin is irritated, your nurse may recommend stoma powder and the crusting technique. Watch the demonstration here.
👶 5. Watch for Output and Leaks
- Infants and toddlers may require frequent pouch changes (every 1–2 days).
- High-output stomas may benefit from larger bags or overnight drainage systems. Watch here for a demonstration.
- Check the pouch seal often, especially during tummy time or crawling stages.
💡 6. Consider Extras
- Ostomy belts or soft belly bands can help keep pouches in place on wiggly toddlers. These work well.
- Onesies or snug-fitting undershirts help prevent little hands from tugging on pouches.
Final Thoughts
Pediatric ostomies may be new territory, but with patience, practice, and support, you’ve got this. As a caregiver, you are doing an incredible job adjusting to a new normal.
Every child is unique, and so is every pouching routine. Don’t hesitate to reach out to your WOC nurse for troubleshooting, product suggestions, or just some extra reassurance.
And most of all—remember this: children with ostomies can live happy, active, joyful lives. This is just one part of their journey, not the whole story.
I hope this helps 🙂
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