Living with Amniotic band syndrome
A condition in which bands from the sac around a baby in the womb affect how parts of the body develop.
Understanding Amniotic band syndrome
As the baby grows, the bands may attach to and affect different parts of the body, which can cause tight rings around an area or even loss of a part. Signs vary a lot depending on which areas are involved. It is present during pregnancy or at birth.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tight rings around the fingers, toes, or limbs
- Short or missing fingers, toes, or limbs
- Wide-set eyes
- Too much fluid in the brain (hydrocephalus)
- Prominent forehead
- Cleft lip or palate
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, genetic specialists and skin, hair, and nail 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
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- 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 that in most cases the cause of constriction rings syndrome remains unknown.
Also known as: adam syndrome; amniotic band constriction; amniotic band sequence; amniotic bands; amniotic bands sequence; amniotic deformity-adhesion-mutilation syndrome
Patient organizations
- Fetal Health FoundationAmniotic band syndrome · United States
- myFaceAmniotic band syndrome · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Amniotic band syndrome.
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