Hirschsprung disease

Overview

Without nerves in the end of the bowel, stool can't move through, causing a blockage.

Surgery removes the part without nerves.

Symptoms

Common signs:

• No stool after birth
• Baby straining or not pooping

Less common

• Swollen belly
• Poor feeding
• Vomiting

Look up a symptom: Baby straining or not pooping · Bloating or gas · Constipation · Vomiting

When to get medical care

Causes

Development.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• Biopsy:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Follow feeding advice after surgery
• Know signs of gut infection
• Watch for swelling and fever

Which doctor treats this

• Start with your child's pediatrician.
• They may send you to a pediatric specialist: a pediatric surgeon.

Living with it

Support groups and helplines

• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Children, pregnancy, and older adults

• Children with Down syndrome: Higher risk.
• Boys: More common.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

For caregivers

• Learn the warning signs and when to call the doctor or 911.
• Keep a list of your child's medicines, doses, and doctors on your phone.
• Tell teachers, coaches, and sitters what to watch for and what to do.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Most children do well after surgery.

Most do well after surgery.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?
• What care is needed after surgery?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Hirschsprung disease