Living with Short stature-wormian bones-dextrocardia syndrome
A rare condition present at birth with short height, extra skull bones and a heart on the right side of the chest.
Understanding Short stature-wormian bones-dextrocardia syndrome
It is marked by extra small bones in the skull (wormian bones), a heart that points to the right side of the chest (dextrocardia), and short stature from growth hormone deficiency. Other reported features include kidney differences, anal and genital differences, mild developmental delay and facial differences. Signs begin in the newborn and infant period.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Extra bones in the skull (wormian bones)
- Heart pointing to the right (dextrocardia)
- Short stature from low growth hormone
- Small or missing kidney
- Closed anus (anal atresia)
- Small lower jaw (micrognathia)
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 brain and nervous 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
- Brain and nervous system specialists (neurologists); 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 cause this condition, but it doesn't list the gene or how it is inherited.
Also known as: growth hormone deficiency with wormian bones, cardiac anomaly, and brachycamptodactyly; short stature, wormian bones, dextrocardia syndrome; stratton parker syndrome; stratton-parker syndrome
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 Short stature-wormian bones-dextrocardia syndrome.
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