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Living with Congenital omphalocele

A rare birth difference in which part of the belly wall is open and organs bulge out in a sac near the belly button.

Understanding Congenital omphalocele

Congenital omphalocele is a rare birth defect of the abdominal wall in which organs push out near the belly button inside a protective sac.

It is non-syndromic, meaning it occurs on its own rather than as part of a syndrome. It forms during pregnancy. The organs that bulge out are covered by a sac.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

Omphalocele (organs bulging out near the belly button)
Premature birth

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
See a specialist
Your doctor may refer you to a specialist who knows rare conditions.
Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.

Care & treatment

Care team: A doctor familiar with rare conditions, plus specialists as needed
Expert care: Ask about multidisciplinary care centers for rare conditions
Treatment: GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
Research: Clinical trials and observational studies may be options. See the research section below.

General information, not medical advice. Your care team makes the decisions.

Everyday life

Living with a rare condition is easier with support.

Connect with O Warrior
Keep notes on symptoms, changes and questions for appointments
Ask about patient registries that help research
Look into financial aid and travel resources for care visits

Bring these questions to your next doctor visit

How large is the omphalocele, and what care will my baby need?

Are other birth differences present that we should check for?

Which surgical team and where should delivery take place?

Quick facts

Symptoms usually startduring Pregnancy

GARD doesn't describe a cause for this condition yet.

Also known as: amniocele; exomphalos; omphalocele; omphalocele (disease); omphalocoele

Patient organizations

O WarriorCongenital omphalocele · United States

Source: NIH GARD · Congenital omphaloceleGARD ID 16540 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Congenital omphalocele.

Explore the Congenital omphalocele blog

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Explore research for Congenital omphalocele

Explore actively recruiting Congenital omphalocele studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Congenital omphalocele with HealthSpark. Share your city to explore research near you.

Recruiting studies from ClinicalTrials.gov
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

HealthStoryfor Congenital omphalocele

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