Living with Sirenomelia
A birth defect in which a baby is born with one lower limb or with two legs fused together.
Understanding Sirenomelia
Features vary a lot. They may include spine and bone differences, and missing or underdeveloped sex organs, rectum, kidneys or bladder. A closed rectal opening and other bowel differences may occur. GARD says surgery has been successful in separating joined legs. It is noticed during pregnancy or at birth.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fused legs or a single lower limb
- Missing or defective spine bones
- Closed anus (anal atresia)
- Small or missing kidneys
- Genitals that are unclear in shape
- Spina bifida
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 bone and joint specialists, digestive system specialists, genetic 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.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Digestive system specialists (gastroenterologists); Genetic specialists (geneticists); Urinary and male reproductive system specialists (urologists)
- 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 Pull-thru Network
- 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 the exact cause is unknown. It is believed to come from irregularities in the early development of the embryo's blood circulation.
Also known as: fused legs and feet; mermaid malformation; mermaid syndrome; sirenomelia sequence; sirenomelus; symmelia
Patient organizations
- Pull-thru NetworkSirenomelia · United States
You are more than your diagnosis
Perspectives from people navigating life with Sirenomelia.
Explore research for Sirenomelia
Explore actively recruiting Sirenomelia studies with HealthSpark.
Find actively recruiting studies for Sirenomelia with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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