Hirschsprung’s Disease (HD) is a rare but serious congenital condition that affects the large intestine. It occurs when nerve cells (ganglion cells) are missing from the muscles of a baby’s colon, preventing the intestines from moving stool properly. This can lead to severe constipation, intestinal blockage, and in some cases, life-threatening complications.
Understanding Hirschsprung’s Disease
Hirschsprung’s Disease is typically diagnosed in newborns and infants, though milder cases might not be recognized until later in childhood. The most common signs include:
- Failure to pass meconium within 48 hours of birth
- Chronic constipation or difficulty with bowel movements
- Abdominal swelling (distension)
- Vomiting, often green or brown in color
- Poor feeding and slow growth
- Severe cases may lead to enterocolitis, a life-threatening infection requiring immediate medical attention
The primary treatment for Hirschsprung’s Disease is surgical intervention, often involving a colostomy or ileostomy to allow waste to bypass the affected section of the colon. Many children go on to have a pull-through procedure, restoring bowel function.
Life After Surgery: Real Parent Advice for Ostomy Care
For parents navigating the world of ostomy care after their child’s Hirschsprung’s diagnosis, the learning curve can be steep. Here are practical, real-world tips from parents who’ve been there:
1. Expect Change & Be Prepared
“Ostomy supplies that work well for the first 3-6 months may suddenly stop working, and you won’t always know why. We made regular visits to an ostomy nurse because each milestone—rolling, crawling, walking—changed how the bag fit and functioned.”
2. Ostomy Bag Hacks for Comfort & Functionality
- Punch tiny vent holes in the top of the bag with a pushpin to reduce gas buildup and prevent ballooning.
- Use a spandex belt (originally designed for umbilical hernias) to keep the bag in place while babies roll, crawl, or learn to walk. Sewing a small pocket for the bag inside the belt can add extra security.
- Invest in an ostomy cleaning bottle to make rinsing out the bag easier.
- Go up a size in clothing early on—many parents skip jeans in favor of stretchier, more comfortable options.
3. Always Have an Emergency Kit
“I never leave the house without a fully stocked emergency ostomy kit. We keep extra supplies in the diaper bag and a backup kit in the car. Blowouts happen, and being prepared saves a lot of stress!” Here’s what to include:
- Extra ostomy bags & wafers
- Barrier wipes & adhesive remover
- Ostomy powder & paste
- Scissors (for trimming wafers)
- Disposable bags for used supplies
- A change of clothes
4. Diet Matters: Avoid Excess Gas
Children with ostomies may experience more gas buildup, which can cause discomfort and affect bag adhesion. Parents recommend limiting gas-producing foods such as:
- Broccoli
- Beans
- Carbonated drinks
- Dairy (if sensitive)
Related Post: How to Relieve Gas with an Ostomy
5. Making the Decision: Early Surgery vs. Waiting
Many parents struggle with the timing of an ostomy placement. One mom shares, “We put off the surgery for three years, and I wish we hadn’t. Looking back, I would tell myself to do it sooner—our daughter suffered so much, and the ostomy was the best decision we ever made.”
Caring for Your Child’s Ostomy: Preventing and Treating Irritated Skin
Managing an ostomy in infants and young children with Hirschsprung’s Disease requires special attention, especially when skin irritation occurs. Delicate skin is prone to redness, soreness, and even breakdown due to frequent appliance changes and moisture buildup. Here’s how to protect your child’s skin and ensure a comfortable ostomy experience.
1. Gentle Removal and Cleaning
Proper removal of the ostomy appliance is crucial in preventing further irritation.
- Use an Alcohol-Free Adhesive Remover – Opt for a pediatric-friendly spray adhesive remover to avoid painful pulling. Spray generously and allow it to dissolve the adhesive before gently peeling the appliance away. Avoid wipes, as repeated rubbing can worsen irritation.
- Clean with Soft, Lint-Free Materials – Instead of harsh scrubbing, use a soft baby washcloth or gauze dampened with warm water to remove any residue.
- Choose a Mild, Fragrance-Free Cleanser – Avoid soaps with added fragrances or harsh ingredients. A hypoallergenic baby wash is a safer option.
- Ensure the Skin is Completely Dry – Pat the skin dry with a soft towel. For extra dryness, use a hairdryer on a cool, low setting from a safe distance. Moisture can cause adhesion issues and worsen irritation.
2. Choosing the Right Ostomy Supplies
The right appliance and barrier products can make a big difference in preventing skin issues.
- Pediatric Convex Wafers – These are designed for smaller stomas and changing body contours. An ostomy nurse can help find the right fit.
- Limit Barrier Rings and Stoma Paste – While helpful for some, these products can trap moisture and lead to further irritation. Start with just the wafer on dry skin.
- Use Skin Tac with Caution – If extra adhesion is needed, consult your child’s ostomy nurse before applying Skin Tac or any other adhesive product.
3. When to Seek Medical Advice
If skin irritation persists or worsens, professional help is necessary.
- Consult an Ostomy Nurse or Pediatric Dermatologist – Persistent redness, open sores, or signs of infection require medical attention.
- Ask About Prescription Barrier Creams – A pediatric-safe steroid cream or protective ointment may be recommended to heal damaged skin.
- Consider Hirschsprung’s-Related Factors – Since Hirschsprung’s Disease can involve additional digestive challenges, your child’s medical team should guide any treatment adjustments.
Hirschsprung’s Disease: FAQ’s
A baby may need an ostomy bag if they have a condition that prevents the intestines from properly eliminating waste. This includes congenital conditions like Hirschsprung’s Disease, necrotizing enterocolitis (NEC), and other intestinal obstructions. An ostomy helps reroute stool through an opening in the abdomen when part of the intestine is not functioning properly.
A stoma can be created at any age, including newborns, infants, and adults. In many cases, babies are given a stoma within the first few days or weeks of life if they are born with a condition requiring surgical intervention.
An ostomy for a preemie baby is a surgically created opening in the abdomen that allows waste to exit the body. Premature babies may require an ostomy if they develop necrotizing enterocolitis (NEC), a severe intestinal condition, or if they are born with an obstruction or malformation of the intestines.
Yes, babies can have a stoma. In fact, many infants with conditions like Hirschsprung’s Disease, NEC, or bowel obstruction require a temporary or permanent stoma to manage their condition and allow for proper waste elimination.
Conditions that may require an ostomy bag include Hirschsprung’s Disease, necrotizing enterocolitis (NEC), Crohn’s disease, ulcerative colitis, certain birth defects affecting the intestines, and cases of severe bowel trauma or obstruction.
Yes, a baby with a stoma can do tummy time, but extra precautions may be needed. Parents often use padding or special belts to prevent the bag from being pulled or pressed on. Consulting an ostomy nurse for personalized recommendations can help ensure a safe and comfortable tummy time experience.
September is Hirschsprung’s Disease Awareness month.
Final Thoughts on Hirschsprung’s Disease
Hirschsprung’s Disease is a challenging diagnosis, but with the right medical care and community support, children can thrive. Whether you’re preparing for surgery, managing an ostomy, or just looking for practical tips, know that you’re not alone. Many parents have walked this path before you, and their insights can make the journey a little easier.
If you’re looking for more resources, join online support groups or connect with an ostomy nurse for personalized advice. And most importantly—trust your instincts, advocate for your child, and take it one day at a time.