Living with Atresia of small intestine
A condition present from birth in which part of the small intestine has no normal opening.
Understanding Atresia of small intestine
This blocks the path of food and fluid through the gut. It can be seen during pregnancy and may come with other digestive differences, like intestinal malrotation (the intestine is positioned abnormally).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Swollen belly (abdominal bloating)
- Vomiting
- Feeding difficulties
- Poor weight gain (failure to thrive)
- Intestinal malrotation
- Slow growth before 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 genes (also called variants) cause this condition. It is listed as autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: apple peel syndrome; atresia of the small intestine; congenital atresia of small intestine; congenital atresia of the small intestine; congenital small intestine atresia; intestinal atresia type iiib
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 Atresia of small intestine.
Explore research for Atresia of small intestine
Explore actively recruiting Atresia of small intestine studies with HealthSpark.
Find actively recruiting studies for Atresia of small intestine with HealthSpark. Share your city to explore research near you.
- 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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