Living with Isolated congenital microcephaly
A neurological condition in which the head is much smaller than expected because the brain has not grown at a typical rate.
Understanding Isolated congenital microcephaly
Skull growth depends on brain growth, so this often happens when the brain does not grow at a typical rate. Some children have normal intelligence and development. Others may have seizures, developmental delay, intellectual disability, movement and balance problems, feeding difficulties, hearing loss, or vision problems. It can be noticed during pregnancy or in newborns.
Signs & symptoms
Symptoms vary from person to person. GARD says these may occur, depending on severity:
- Head much smaller than expected
- Seizures
- Developmental delay
- Intellectual disability
- Movement and balance problems
- Feeding difficulties
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 Child Neurology 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
It can be caused by genetic changes. It can also be linked to viruses during pregnancy (such as rubella, toxoplasmosis, and cytomegalovirus), drugs, alcohol, toxic chemicals, untreated maternal PKU, or severe malnutrition.
Also known as: microcephaly, primary; primary microcephaly; true microcephaly
Patient organizations
- Child Neurology FoundationIsolated congenital microcephaly · United States
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Perspectives from people navigating life with Isolated congenital microcephaly.
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