Living with Limb body wall complex
A condition with multiple severe birth differences, including openings in the chest or belly wall and limb differences.
Understanding Limb body wall complex
It typically causes openings in the chest and belly wall and differences in the arms and legs. Other features may include facial clefts, a short or missing umbilical cord, scoliosis, neural tube defects, and differences in the kidneys, bladder, or genitals.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Opening in the belly wall
- Limb differences
- Chest differences
- Heart differences
- Spine differences
- Abnormal attachment of the umbilical cord
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 maternal-fetal medicine specialists and women’s reproductive health 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
- Maternal-fetal medicine specialists (pregnancy-related); Women’s reproductive health specialists (obstetricians / gynecologists)
- 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
- 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
The exact cause of LBWC is unclear. GARD doesn't list a specific gene or inheritance pattern.
Also known as: body stalk anomaly; lbwc (limb body wall complex) syndrome; lbwc syndrome
Patient organizations
- Fetal Health FoundationLimb body wall complex · United States
You are more than your diagnosis
Perspectives from people navigating life with Limb body wall complex.
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