Living with Cloacal exstrophy
A serious birth difference where the bladder and part of the intestine are outside the belly, often with spine and other differences.
Understanding Cloacal exstrophy
OEIS stands for omphalocele, exstrophy, imperforate anus, and spinal defects. The bladder and part of the intestine are exposed outside the belly, and the pelvis is open like a book. Spina bifida occurs in up to 75% of cases, and kidney differences are common. It happens in the first trimester, apparently when a tissue called the cloacal membrane ruptures.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Bladder and intestine outside the belly
- Anus not open (imperforate anus)
- Omphalocele (belly wall defect near the navel)
- Spina bifida and other spine differences
- Kidney differences
- Differences in the genitals
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include digestive system specialists, genetic specialists, kidney specialists and urinary and male reproductive system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Fetal Health Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Genetic specialists (geneticists); Kidney specialists (nephrologists); Urinary and male reproductive system specialists (urologists)
- Expert care
- Expert lists: Fetal Health Foundation
- 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 Fetal Health Foundation and other patient organizations
- 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
Quick facts
GARD says it occurs in the first trimester, apparently from rupture of the cloacal membrane, which leads to abnormal development of the belly wall and other structures.
Also known as: cloacal exstrophy (disease); exstrophy of cloaca; exstrophy of cloaca sequence; omphalocele-cloacal exstrophy-imperforate anus-spinal defect syndrome
Patient organizations
- Fetal Health FoundationCloacal exstrophy · United States
- Pull-thru NetworkCloacal exstrophy · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Cloacal exstrophy.
Explore research for Cloacal exstrophy
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