Hirschsprung Disease: How to Care for Your Child

If it's not treated, Hirschsprung disease causes severe, long-term constipation. Surgery fixes this so your child can have an active, healthy life.

Your Child's Diagnosis

The intestine is a long tube that carries food as it is digested from the stomach all the way down to the anus, where food waste leaves the body as stool (poop). In the wall of the intestine there are muscles — and nerves that control them — that push the food along until the waste is released as a bowel movement.

In Hirschsprung disease, a person is born with too few or no nerve cells in part or all of the large intestine (colon). This makes it difficult for stool to pass through the colon and out of the anus. A blockage forms, so the child becomes constipated and cannot poop normally. If this is not corrected, this can sometimes lead to life-threatening complications.

Symptoms of Hirschsprung disease can include constipation, diarrhea, vomiting, gas, a swollen belly, and difficulty gaining weight. Some children with Hirschsprung disease also have kidney and urinary tract problems.

Health care providers diagnose the condition by taking tiny pieces (biopsies) of the intestine to look at under a microscope. In some cases, X-rays, other imaging studies (such as a barium enema), or tests that measure how well the intestinal muscles are working are done to help make the diagnosis, rule out other problems, or guide treatment.

Hirschsprung disease is treated with surgery. The surgeon removes the section of the colon without nerves and reattaches the remaining portion of the colon to the rectum (the area where poop is temporarily stored just before a bowel movement). Sometimes this takes more than one operation.

Home Care Instructions

  • Give your child any prescribed medicines as directed by the health care provider.
  • If your child is constipated, offer fiber-containing foods like bran, prune or pear juice, apples, bananas, blueberries, and whole-grain cereals and breads.

Special Instructions

  • Keep all follow-up appointments with the health care provider or specialist.

Call Your Health Care Provider if...

  • Your child has severe constipation.

Go to the ER if...

Your child:

  • Has vomiting, diarrhea (especially explosive or foul-smelling diarrhea), severe belly pain, or a swollen belly.