Craniosynostosis: Causes, Symptoms, and Treatment
Medically reviewed by Sumiran Racherla, MD, Internal Medicine. Last reviewed: October 23, 2026.
What kind of doctor treats Craniosynostosis?
A pediatric neurosurgeon, a surgeon for the brain and nerves in children, and a craniofacial team usually treat craniosynostosis. A pediatrician, a children's doctor, often spots it first. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What is craniosynostosis?
Craniosynostosis is a birth defect. The bones in a baby's skull join together too early, before the brain forms fully. As the brain grows, the skull can become misshapen.
The spaces between a baby's skull bones are called sutures. They allow the skull to grow as the brain grows. When one closes early, the head stops growing in only that part of the skull.
Researchers estimate that about 1 in every 2,500 babies has craniosynostosis in the United States.
Symptoms
The first sign is usually an abnormally shaped skull. Other signs may include:
- No soft spot on the baby's skull.
- Slow growth or no growth in head size over time.
The head shape depends on which suture closes early. If the sagittal suture closes, the head grows long and narrow. This is the most common type.
If both coronal sutures close early, the head grows broad and short. If a lambdoid suture closes early, the back of the head may be flat.
Sometimes more than one suture closes early. The brain might not have enough room to grow, and pressure can build up inside the skull.
Causes and who gets it
The cause is unknown in most babies. In some cases, a change in a single gene is the cause. In most cases it is thought to be caused by a combination of genes and other factors.
Some medicines taken before or early in pregnancy might increase the risk. Craniosynostosis can also be caused by a genetic issue, a metabolic disease, or an overactive thyroid.
How doctors diagnose it
It is usually diagnosed soon after a baby is born. Providers can find it by feeling the baby's head for hard edges along the sutures and unusual soft spots. They also look at the shape of the baby's face.
The provider will usually request tests to confirm it. A CT scan, a special x-ray test, can show the details of the skull and brain.
Treatment
Many types of craniosynostosis need surgery. The surgery relieves pressure on the brain so it can grow properly. It is usually done during the first year of life.
Babies with very mild craniosynostosis might not need surgery. Special medical helmets can help mold the baby's skull.
Most babies with craniosynostosis are otherwise healthy. Some children have developmental delays or intellectual disabilities.
A baby with craniosynostosis needs to see a doctor regularly to check that the brain and skull are developing properly.
When to see a doctor
Talk to your baby's doctor if your baby's head looks misshapen, has no soft spot, or is not growing. Without treatment, the pressure in the skull can sometimes lead to blindness, seizures, or brain damage.
Call 911 or go to the emergency room if your child has a seizure, trouble breathing, or is hard to wake up.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. A direct primary care doctor can check your baby's growth and head shape at regular visits. They can also help you reach a craniofacial team.
Common questions
Does craniosynostosis need surgery?
Often, yes. Many types need surgery. Very mild cases might not.
Can craniosynostosis harm the brain?
Sometimes, if it is not treated. The pressure in the skull can lead to blindness, seizures, or brain damage.
How common is craniosynostosis?
About 1 in every 2,500 babies in the United States has it.
Can a helmet fix craniosynostosis?
It depends. Special helmets can help mold the skull, but many types of craniosynostosis need surgery.
Sources
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
