Hirschsprung disease happens when a baby is born with nerves missing from part of the intestine (bowel). Without these nerves, poop (stool) can't move through the intestines normally. It backs up, causing constipation (fewer poops than usual, or dry, hard, or difficult-to-pass poop) and a swollen belly. Although it is rare, children with Hirschsprung disease can get a serious infection in the intestines.

The treatment for Hirschsprung disease is surgery to remove the section that is missing nerves and reconnect the healthy parts of the intestine. This helps most kids poop normally and live a healthy life.

Here's how to care for your child at home after surgery.

Follow your healthcare provider's instructions for:

• Giving any medicines for pain. These may include prescription pain medicine, acetaminophen (Tylenol® or a store brand), or ibuprofen (Advil®, Motrin®, or a store brand). Some prescription pain medicines also include acetaminophen or ibuprofen. To avoid giving too much, give the medicines exactly as your healthcare provider recommends. Don't give ibuprofen to babies under 6 months old.
• Giving any medicines to keep the poop soft (stool softener) or move the poop through the intestines (laxative)
• Diarrhea care. Your child may have diarrhea in the days to weeks after the operation. This can irritate the skin, so it's important to follow instructions for:
  • Any special creams prescribed by the healthcare provider. Keep using the cream until your care team says it's OK to stop.
  • How to clean the area around the anus
• Caring for the surgery cuts (incisions), including changing any dressings and following cleaning instructions
• What physical activities your child needs to avoid (such as sports and gym class) and when they can return to their regular schedule
• When your child can bathe
• When your child can go back to a regular diet
• When to schedule follow-up appointments

More instructions:

• Let your child rest as needed.
• Offer your child plenty of liquids to prevent dehydration (not enough water in the body) and help keep poop soft. Babies can continue to breastfeed or take formula. Older kids can have warm herbal (no caffeine) tea, broth, watered-down white grape juice, crushed ice, flavored ice pops, or water. If your healthcare provider recommended an oral electrolyte solution (such as Pedialyte®, Enfalyte®, or a store brand), give it as directed.
• Once your child is back to their normal diet, encourage a high-fiber diet to help keep their poop soft.
  • For babies, high-fiber foods include avocado, ripe banana, and other fruits; infant cereals made from whole wheat, rye, or a multigrain mix; and pureed prunes or peas.
  • For kids and teens, high-fiber foods include bran cereal, apples, pears, strawberries, prunes, beans (such as pinto, kidney, black, or lima), sweet potatoes, and chia seeds.
• Keep track of how often your child poops, whether the poop is hard or soft, and whether your child is straining to poop.

Your child:

• Has new or worsening belly pain, constipation, or diarrhea
• Seems to have pain when pooping
• Has pooping accidents
• Gets a fever
• Isn't back to eating normally within a few days
• Has signs of an infection at the incision, such as redness, swelling, or yellowish or greenish drainage (pus)

Your child:

• Isn't drinking at all or has signs of dehydration
• Has a fever; a swollen, hard, or very painful belly; bloody or explosive diarrhea; or vomiting (throwing up). These can be signs of a serious infection called enterocolitis.

You know your child best. If they have symptoms that worry you or seem very sick, call your healthcare provider or take your child to the ER.

What are the symptoms of Hirschsprung disease? Most kids with Hirschsprung disease are diagnosed shortly after birth when they have a swollen belly, vomiting, or trouble pooping. A child with less severe symptoms might not be diagnosed until later.

What is enterocolitis? Hirschsprung-associated enterocolitis is a rare but serious intestinal infection that can develop in children with Hirschsprung disease. Backed-up poop lets harmful bacteria grow and infect the intestine. This causes explosive diarrhea, fever, vomiting, and severe belly pain. It requires immediate medical treatment in the hospital. Enterocolitis can happen before surgery, soon after surgery, or even years after.

Will my child have long-term problems with their intestines? Most children do very well after surgery. However, some children may have problems such as constipation, diarrhea, or pooping accidents. Most of these problems are likely to improve as a child gets older. If needed, your healthcare team can help your child manage these problems.

How often does my child need follow-up care? Your child will need regular follow-up visits with their healthcare team, which may include a pediatric surgeon, gastroenterologist (doctor that specializes in problems with the intestines and other parts of the digestive system), and other specialists. During the first year after surgery, your child will see the healthcare team frequently. After that, your child should have checkups once or twice a year. These visits help the team make sure your child's intestines are continuing to heal and that any problems are caught and treated early.