I'm Worried About Craniosynostosis
Medically reviewed by Dr. Michael Okonkwo, MD, FAAP · Board-Certified Neonatologist
Content reviewed against published AAP, CDC, Mayo Clinic guidelines
Last reviewed:
If your baby has been diagnosed with or you suspect i'm worried about craniosynostosis, here is what the evidence says.
The short answer
Craniosynostosis occurs when one or more of the fibrous joints (sutures) between a baby's skull bones close prematurely, affecting head growth and shape. It occurs in about 1 in 2,000-2,500 births. While it requires surgical treatment, outcomes are generally excellent when diagnosed and treated early. Not all abnormal head shapes are craniosynostosis - positional plagiocephaly is far more common.
Key takeaways
- Craniosynostosis occurs when one or more of the fibrous joints (sutures) between a baby's skull bones close prematurely, affecting head growth and shape. It occurs in about 1 in 2,000-2,500 births. While it requires surgical treatment, outcomes are generally excellent when diagnosed and treated early. Not all abnormal head shapes are craniosynostosis - positional plagiocephaly is far more common.
- Usually normal when: Your baby has a slightly asymmetric head shape but the sutures are open, the fontanelles feel normal, and the head is growing on its expected curve
- Call your doctor if: Your baby has signs of increased intracranial pressure: persistent vomiting, excessive sleepiness, bulging eyes, a bulging fontanelle, or the head circumference is falling off its growth curve, as these require urgent neurosurgical evaluation
- Varies by age — see the age-by-age breakdown below
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What Parents Should Know
According to AAP, CDC, Mayo Clinic guidelines, craniosynostosis occurs when one or more of the fibrous joints (sutures) between a baby's skull bones close prematurely, affecting head growth and shape. It occurs in about 1 in 2,000-2,500 births. While it requires surgical treatment, outcomes are generally excellent when diagnosed and treated early. Not all abnormal head shapes are craniosynostosis - positional plagiocephaly is far more common. At 0-2 months, craniosynostosis may be noticeable at birth or in the first few weeks. Signs include an unusual head shape, a raised bony ridge felt along a suture line, a soft spot (fontanelle) that feels closed or very small, or asymmetric growth of the head. The specific head shape depends on which suture is affected: sagittal (long narrow head), coronal (flat forehead on one or both sides), metopic (triangular forehead with a ridge), or lambdoid (flat on one side of the back). Pediatricians check sutures and head shape at every well-baby visit. It is generally considered normal when your baby has a slightly asymmetric head shape but the sutures are open, the fontanelles feel normal, and the head is growing on its expected curve. However, you should contact your pediatrician promptly if your baby has signs of increased intracranial pressure: persistent vomiting, excessive sleepiness, bulging eyes, a bulging fontanelle, or the head circumference is falling off its growth curve, as these require urgent neurosurgical evaluation.
Normal vs. Concerning
By Age
What to expect by age
0-2 months
Craniosynostosis may be noticeable at birth or in the first few weeks. Signs include an unusual head shape, a raised bony ridge felt along a suture line, a soft spot (fontanelle) that feels closed or very small, or asymmetric growth of the head. The specific head shape depends on which suture is affected: sagittal (long narrow head), coronal (flat forehead on one or both sides), metopic (triangular forehead with a ridge), or lambdoid (flat on one side of the back). Pediatricians check sutures and head shape at every well-baby visit.
2-6 months
As the baby grows, the head shape abnormality from craniosynostosis typically becomes more pronounced because the skull cannot expand normally in the direction of the fused suture. This is a key difference from positional plagiocephaly, which often improves with repositioning. If craniosynostosis is suspected, your doctor will order imaging, usually a CT scan of the skull, to confirm which sutures are affected. Early referral to a pediatric craniofacial center is important.
6-12 months
Surgery for craniosynostosis is typically performed between 3-12 months of age, depending on the type and severity. The goal of surgery is to release the fused suture, allow normal brain growth, correct the head shape, and prevent increased intracranial pressure. For single-suture craniosynostosis, minimally invasive endoscopic surgery followed by helmet therapy is often possible if done before 6 months. Open surgical repair may be recommended for older babies or more complex cases.
12 months+
After surgical correction, most children have excellent cosmetic and developmental outcomes. Your child will be monitored for proper head growth and development. Rarely, a suture can re-fuse (re-synostosis) and require additional surgery. Children with single-suture craniosynostosis and no associated syndrome typically develop normally. Multi-suture craniosynostosis or syndromic forms may require additional surgeries and closer developmental monitoring.
What to Tell Your Pediatrician
- Describe when you first noticed i'm worried about craniosynostosis and how it has changed over time.
- Note your baby's current age and which age-specific patterns you are seeing.
- Mention if you feel a raised bony ridge along the top, sides, or forehead of your baby's skull.
- Mention if your baby's head shape seems to be getting more abnormal rather than improving over time.
- Bring a list of any questions or observations you want to discuss at the appointment.
What Should You Do?
When to take action
- Your baby has a slightly asymmetric head shape but the sutures are open, the fontanelles feel normal, and the head is growing on its expected curve
- Your baby has positional flattening that improves with repositioning and tummy time, with no raised ridges along suture lines
- Your pediatrician has examined the head and confirmed that sutures are open and head growth is normal
- You feel a raised bony ridge along the top, sides, or forehead of your baby's skull
- Your baby's head shape seems to be getting more abnormal rather than improving over time
- The soft spot (anterior fontanelle) feels very small, hard to find, or seems to have closed early
- Your baby has signs of increased intracranial pressure: persistent vomiting, excessive sleepiness, bulging eyes, a bulging fontanelle, or the head circumference is falling off its growth curve, as these require urgent neurosurgical evaluation
- Your pediatrician has identified a fused suture and is recommending a craniofacial referral - do not delay this evaluation, as timing of surgery matters for outcomes
What You Can Do at Home
- Keep track of when you notice i'm worried about craniosynostosis — noting the time of day, duration, and any triggers can help your pediatrician.
- Remember that your baby has a slightly asymmetric head shape but the sutures are open, the fontanelles feel normal, and the head is growing on its expected curve — this is generally within the range of normal.
- At 0-2 months, focus on observation rather than intervention unless your pediatrician advises otherwise.
- Follow any care instructions from your pediatrician. Keep a written log of symptoms to bring to appointments.
- While monitoring at home, seek immediate care if your baby has signs of increased intracranial pressure: persistent vomiting, excessive sleepiness, bulging eyes, a bulging fontanelle, or the head circumference is falling off its growth curve, as these require urgent neurosurgical evaluation.
Related Resources
Frequently asked questions
Is i'm worried about craniosynostosis normal?
When should I call the doctor about i'm worried about craniosynostosis?
When is i'm worried about craniosynostosis normal?
What causes i'm worried about craniosynostosis?
What should I mention to my pediatrician about i'm worried about craniosynostosis?
Is i'm worried about craniosynostosis normal at 0-2 months?
Is i'm worried about craniosynostosis normal at 2-6 months?
Should I go to the ER for i'm worried about craniosynostosis?
Does i'm worried about craniosynostosis go away on its own?
References
- [1]HealthyChildren.org. Craniosynostosis. AAP
- [2]Centers for Disease Control and Prevention. Facts About Craniosynostosis. CDC
- [3]Mayo Clinic. Craniosynostosis: Diagnosis and Treatment. Mayo Clinic
Doctor Visit Checklist
Bring this checklist to your next pediatrician visit to discuss I'm Worried About Craniosynostosis.
Things to mention
- Describe when you first noticed i'm worried about craniosynostosis and how it has changed over time.
- Note your baby's current age and which age-specific patterns you are seeing.
- Mention if you feel a raised bony ridge along the top, sides, or forehead of your baby's skull.
- Mention if your baby's head shape seems to be getting more abnormal rather than improving over time.
- Bring a list of any questions or observations you want to discuss at the appointment.
Observations to share
- You feel a raised bony ridge along the top, sides, or forehead of your baby's skull
- Your baby's head shape seems to be getting more abnormal rather than improving over time
- The soft spot (anterior fontanelle) feels very small, hard to find, or seems to have closed early
Urgent signs to report immediately
- Your baby has signs of increased intracranial pressure: persistent vomiting, excessive sleepiness, bulging eyes, a bulging fontanelle, or the head circumference is falling off its growth curve, as these require urgent neurosurgical evaluation
- Your pediatrician has identified a fused suture and is recommending a craniofacial referral - do not delay this evaluation, as timing of surgery matters for outcomes
My notes
From ismybabyalright.com — free, evidence-based baby health guides
All content follows our editorial policy and is reviewed against published clinical guidelines.
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Related Resources
Bottom line
Most cases of i'm worried about craniosynostosis are normal. Talk to your pediatrician if your baby has signs of increased intracranial pressure: persistent vomiting, excessive sleepiness, bulging eyes, a bulging fontanelle, or the head circumference is falling off its growth curve, as these require urgent neurosurgical evaluation.
Trust your instincts. If something feels wrong, reach out to your pediatrician. Worrying about your baby means you care — that is a good thing.
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