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PubMed This is a summary of 17 peer-reviewed journal articles Updated
Pediatric Ophthalmology · Craniosynostosis

Why Do Kids With Craniosynostosis Need Eye Exams?

At a Glance

Children with craniosynostosis need regular eye exams because the eyes provide a non-invasive window to monitor pressure inside the skull. Doctors look for optic nerve swelling (papilledema), which is an early warning sign of dangerously high brain pressure that requires medical attention.

In this answer

3 sections

01

The Brain, the Skull, and the Eyes

02

A Non-Invasive Window to the Brain

03

Protecting Vision and Eye Alignment

It might seem strange that a child with a skull condition needs to see an eye doctor (ophthalmologist). However, regular eye exams are a critical, non-invasive way to monitor the pressure inside your child’s head and protect their vision. In children with craniosynostosis, the skull cannot expand normally as the brain grows, which can lead to elevated pressure around the brain. Eye exams help detect this pressure early, before it affects your child’s visual health or neurological development.

The Brain, the Skull, and the Eyes

In children with craniosynostosis, the premature fusing of the skull bones means the brain does not have the normal amount of room to grow. This distorted space can lead to elevated intracranial pressure (ICP)—too much pressure inside the skull. [1][2]

The eyes are directly connected to the brain by the optic nerves. When pressure builds up inside the skull, it presses on these nerves. This pressure causes papilledema, which is a medical term for swelling of the optic nerve. [3][4][5]

Papilledema is a silent but vital warning sign of high brain pressure. Because young children often cannot communicate that they have headaches or blurry vision, an eye doctor can spot this swelling during an exam before outward symptoms appear. While you can watch for signs at home—such as unexplained nausea, frequent vomiting, or unusual changes in behavior like extreme fussiness or lethargy—an eye exam offers a clearer picture of what is happening inside the skull. Children with multiple fused sutures or genetic syndromes (like Craniosynostosis-dysmorphism-brachydactyly syndrome) are especially at risk, but all children with craniosynostosis require regular eye exams to stay safe. [4]

A Non-Invasive Window to the Brain

Monitoring brain pressure traditionally required invasive procedures, but the eyes provide a direct, non-invasive window into what is happening inside the skull. [6][7] The primary way doctors check for papilledema is through a standard dilated eye exam, where they use eye drops to gently widen your child’s pupils. This allows the doctor to shine a special light and look directly at the optic nerve at the back of the eye.

If the doctor needs a closer look, they may use specialized tests that are painless and often modified to accommodate squirming toddlers:

  • Optical Coherence Tomography (OCT): This test uses light waves to take highly detailed cross-section pictures of the back of the eye. It is highly sensitive and can detect optic nerve swelling more accurately than standard clinical exams. [6][8][9]
  • Visual Evoked Potentials (VEP): This test measures the electrical activity of the brain in response to light, helping monitor how well the visual pathways are functioning. It is completely non-invasive and often done by placing gentle sensor stickers on the head while the child looks at a screen or light. [7]

Catching elevated pressure early allows your child’s surgical team to intervene—such as through cranial vault remodeling—to relieve the pressure. This allows the optic nerve swelling to resolve and protects healthy brain development. [10][11][12]

Protecting Vision and Eye Alignment

Besides monitoring brain pressure, children with syndromic craniosynostosis often have changes in the shape and size of their facial bones, including the eye sockets (orbits). [13][14]

This abnormal bone shape can pull or push the eye muscles, leading to strabismus (misaligned, “crossed,” or “wandering” eyes). [13] Frequent eye exams ensure that these vision issues are caught early. This is crucial because untreated strabismus can lead to a “lazy eye” (amblyopia) over time. Depending on the severity, treatments might include glasses, eye patching, or sometimes corrective eye muscle surgery. [15][16][17]

Common questions in this guide

What does an eye exam tell doctors about my child's craniosynostosis?
An eye exam allows doctors to look directly at the optic nerve at the back of the eye. Swelling of this nerve, known as papilledema, is a crucial early warning sign that pressure is building up inside your child's skull due to restricted bone growth.
How do doctors test a squirming toddler for optic nerve swelling?
Doctors typically use a standard dilated eye exam, using gentle eye drops to widen the pupils. If needed, they can also use non-invasive, painless tools like Optical Coherence Tomography (OCT) to take detailed pictures or Visual Evoked Potentials (VEP) using soft sensor stickers.
What signs of high brain pressure should I watch for at home?
At home, you should look out for unexplained nausea, frequent vomiting, frequent headaches, or noticeable behavior changes such as extreme fussiness or lethargy. While these can indicate high pressure, an eye exam is still needed as pressure can build before these symptoms appear.
Can craniosynostosis cause crossed or wandering eyes?
Yes. Because craniosynostosis can change the shape of the facial bones and eye sockets, it can pull or push on eye muscles. This can lead to misaligned or wandering eyes, called strabismus, which can be treated with glasses, patching, or surgery if caught early.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How frequently should my child have a comprehensive eye exam given their specific craniosynostosis diagnosis?
  2. 2.Does your clinic use Optical Coherence Tomography (OCT) or Visual Evoked Potentials (VEP) to check for early signs of optic nerve swelling, and how do you adapt these tests for a toddler?
  3. 3.When looking at my child's eyes today, do you see any signs of papilledema or muscle pulling (strabismus)?
  4. 4.What specific signs or symptoms should I watch for at home that might indicate increased pressure in my child's head?
  5. 5.If you detect optic nerve swelling or vision issues in the future, how will you coordinate with our neurosurgeon or craniofacial surgeon?

Questions For You

Tap a prompt to share your answer — we'll use it plus this page's context to start a tailored conversation.

Related questions

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References

References (17)
  1. 1

    Intracranial volume versus static and pulsatile intracranial pressure values in children with craniosynostosis.

    Langvatn EA, Frič R, Due-Tønnessen BJ, Eide PK

    Journal of neurosurgery. Pediatrics 2019; (24(1)):66-74.

    PMID: 31003225
  2. 2

    Dural sinus volume in children with syndromic craniosynostosis and intracranial hypertension.

    de Goederen R, Cuperus IE, Tasker RC, et al.

    Journal of neurosurgery. Pediatrics 2020; (25(5)):506-513 doi:10.3171/2019.12.PEDS19562.

    PMID: 32005014
  3. 3

    Multisuture Craniosynostosis and Papilledema in Pycnodysostosis: A Paradox?

    Thomas GPL, Magdum SA, Saeed NR, Johnson D

    The Journal of craniofacial surgery 2019; (30(1)):110-114 doi:10.1097/SCS.0000000000004870.

    PMID: 30394969
  4. 4

    Utility of Papilledema for Detection of Elevated Intracranial Pressure in Craniosynostosis.

    Harrison LM, Prabhakar A, Hallac RR, et al.

    The Journal of craniofacial surgery 2025; (36(2)):482-485 doi:10.1097/SCS.0000000000010920.

    PMID: 39820314
  5. 5

    Evaluation of the underlying causes of papilledema in children.

    Hyde RA, Mocan MC, Sheth U, Kaufman LM

    Canadian journal of ophthalmology. Journal canadien d'ophtalmologie 2019; (54(6)):653-658 doi:10.1016/j.jcjo.2019.02.007.

    PMID: 31836094
  6. 6

    Early Recognition of Raised Intracranial Pressure in Craniosynostosis Using Optical Coherence Tomography.

    Rufai SR, Jeelani NUO, McLean RJ

    The Journal of craniofacial surgery 2021; (32(1)):201-205 doi:10.1097/SCS.0000000000006771.

    PMID: 33185414
  7. 7

    Serial Visual Evoked Potentials in Patients with Craniosynostosis and Invasive Intracranial Pressure Monitoring.

    Haredy MM, Liasis A, Fu V, et al.

    Plastic and reconstructive surgery 2019; (144(3)):446e-452e doi:10.1097/PRS.0000000000005935.

    PMID: 31461033
  8. 8

    Elevated Intracranial Pressure in Patients with Craniosynostosis by Optical Coherence Tomography.

    Kalmar CL, Humphries LS, McGeehan B, et al.

    Plastic and reconstructive surgery 2022; (149(3)):677-690 doi:10.1097/PRS.0000000000008821.

    PMID: 35041630
  9. 9

    Feasibility and Repeatability of Handheld Optical Coherence Tomography in Children With Craniosynostosis.

    Rufai SR, Bowman R, Bunce C, et al.

    Translational vision science & technology 2021; (10(8)):24 doi:10.1167/tvst.10.8.24.

    PMID: 34313724
  10. 10

    Intraoperative Intracranial Pressure Changes in Children With Craniosynostosis Undergoing Endoscopic-Assisted Strip Craniectomy.

    Makoshi Z, Hayek G, Aquino V, et al.

    Neurosurgery 2025; (96(3)):640-649 doi:10.1227/neu.0000000000003141.

    PMID: 39166852
  11. 11

    Craniosynostosis Surgery for Increased Intracranial Pressure.

    Still MEH, Chidarala S, Alvarado A, et al.

    The Journal of craniofacial surgery 2022; (33(5)):1454-1457 doi:10.1097/SCS.0000000000008357.

    PMID: 34732671
  12. 12

    Management of secondary intracranial hypertension in untreated craniosynostosis: a case series and literature review.

    AlHammad O, AlWadee R, Latta N, et al.

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2025; (41(1)):354 doi:10.1007/s00381-025-07010-0.

    PMID: 41231398
  13. 13

    The influence of orbital architecture on strabismus in craniosynostosis.

    Lee TC, Walker E, Ting MA, et al.

    Journal of AAPOS : the official publication of the American Association for Pediatric Ophthalmology and Strabismus 2024; (28(1)):103812 doi:10.1016/j.jaapos.2023.10.006.

    PMID: 38219920
  14. 14

    Optic Nerve Head Morphological Variation in Craniosynostosis: A Cohort Study.

    Rufai SR, Thomas MG, Marmoy OR, et al.

    American journal of ophthalmology 2025; (269()):136-146 doi:10.1016/j.ajo.2024.08.021.

    PMID: 39209208
  15. 15

    Apert Syndrome - caveats of squint management.

    Khurana R, Singh A, Kochhar D, Sundar S

    Romanian journal of ophthalmology 2023; (67(2)):200-204 doi:10.22336/rjo.2023.35.

    PMID: 37522017
  16. 16

    The Outcome of Inferior Oblique Myectomy for Apparent Inferior Oblique Overaction Associated with Craniosynostosis.

    Park HW, Han SH

    Korean journal of ophthalmology : KJO 2024; (38(4)):296-303 doi:10.3341/kjo.2023.0146.

    PMID: 38956746
  17. 17

    Evaluation and Management of V pattern Strabismus in Craniosynostosis.

    Elhusseiny AM, Huynh EM, Dagi LR

    Journal of binocular vision and ocular motility 2020; (70(1)):40-45 doi:10.1080/2576117X.2019.1693822.

    PMID: 31855112

This page provides educational information about vision and intracranial pressure monitoring in children with craniosynostosis. It is not a substitute for professional medical advice. Always consult your child's pediatric ophthalmologist or craniofacial surgeon regarding their care.

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