Living with Duodenal atresia
A rare condition present at birth in which a short part of the first section of the small intestine is blocked.
Understanding Duodenal atresia
The blockage can cause vomiting. It may be noticed before birth, when an ultrasound shows a 'double bubble' sign or extra amniotic fluid (polyhydramnios). It is not part of a syndrome with other features. Babies are sometimes born early.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blocked or narrowed first part of the small intestine
- Vomiting
- Extra amniotic fluid during pregnancy
- 'Double bubble' sign on prenatal ultrasound
- Premature birth
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 and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Digestive system specialists (gastroenterologists); Genetic specialists (geneticists)
- 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 rare disease patient organizations for support
- 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 changes in a person's genes cause this condition. It is autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: absence or narrowing of first part of small bowel; atresia of duodenum; congenital atresia of duodenum; congenital duodenal atresia; duodenal atresia (disease); duodenal atresia or stenosis
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Duodenal atresia.
Explore research for Duodenal atresia
Explore actively recruiting Duodenal atresia studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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