Craniosynostosis

Overview

Normally the skull bones stay open so the brain can grow. When one closes too early, the head grows in an unusual shape.

Surgery is usually done in the first year.

Symptoms

Common signs:

• Unusual head shape

Less common

• Ridge along the skull
• Bulging soft spot

When to get medical care

Causes

Development.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.

Who is more likely to get it

• Boys: More common

Possible complications

• High pressure inside the skull (brain swelling): Can happen if several seams close

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• Exam:
• CT:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Follow up after surgery
• Use a helmet if advised
• Keep follow-up visits

Which doctor treats this

• Start with your child's pediatrician.
• They may send you to a pediatric specialist: a neurosurgeon.

Living with it

Support groups and helplines

• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Children, pregnancy, and older adults

• Babies: Found at well visits.
• Boys: More common.

For caregivers

• Learn the warning signs and when to call the doctor or 911.
• Keep a list of your child's medicines, doses, and doctors on your phone.
• Tell teachers, coaches, and sitters what to watch for and what to do.
• Take breaks and ask for help. Caregivers need care too.

Outlook

Surgery usually gives a normal head shape.

Surgery corrects head shape.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?
• What type of surgery is best?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Craniosynostosis