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Craniosynostosis: A Comprehensive Guide for Parents

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At a Glance

Craniosynostosis is a treatable condition where the flexible joints in a baby's skull close too early, causing an abnormal head shape. Treatment usually involves specialized surgery by a craniofacial team to ensure the skull can expand safely as the brain grows.

Key Takeaways

  • • Craniosynostosis occurs when one or more sutures in a baby's skull fuse prematurely.
  • • The condition causes an abnormal head shape because the growing brain forces the skull to expand in different directions.
  • • A specialist can distinguish between true craniosynostosis and a positional flat head.
  • • Treatment typically involves surgery, with options ranging from endoscopic procedures to open cranial vault reconstruction.
  • • A multidisciplinary team, including a pediatric neurosurgeon and plastic surgeon, is essential for optimal care and safe treatment.

Welcome to the Craniosynostosis Resource Guide. Learning that your baby’s skull is not growing as expected can trigger intense anxiety, but this guide is here to provide you with clear, evidence-based facts.

Craniosynostosis (pronounced kray-nee-o-sin-os-TOE-sis) is a condition where one or more of the flexible joints (sutures) in your baby’s skull close too early [1]. Because a baby’s brain grows rapidly in the first year of life, the skull must expand to make room. When a suture is fused, the skull is forced to grow in other directions, resulting in an abnormal head shape [2]. While the diagnosis can be frightening, it is a well-understood, treatable condition.

Please explore the following pages to better understand your child’s journey, prepare for medical appointments, and feel empowered to advocate for their care:

  • Understanding the Diagnosis: Start here for a calming, factual overview of what craniosynostosis is and what it means for your baby.
  • Flat Head vs. Craniosynostosis: Learn how doctors tell the difference between positional plagiocephaly (flat head syndrome) and true suture fusion.
  • Suture Types and Head Shapes: A breakdown of the different types (Sagittal, Metopic, Coronal, Lambdoid) and how they specifically affect your baby’s head shape.
  • Genetics: Isolated vs. Syndromic: Understanding the role of genetics, the difference between isolated and syndromic cases, and when genetic testing is recommended.
  • Treatment Options: A comparison of surgical options, including Endoscopic Strip Craniectomy, Spring-Mediated Cranioplasty, and Open Cranial Vault Reconstruction.
  • Your Care Team: Discover the specialists you need on your team, including the pediatric neurosurgeon, plastic surgeon, and pediatric anesthesiologist.
  • Life After Surgery: What to expect regarding post-operative helmet therapy, intracranial pressure monitoring, and long-term neurodevelopment.

Frequently Asked Questions

What is craniosynostosis?
Craniosynostosis is a condition where one or more of the flexible joints, or sutures, in a baby's skull close too early. Because a baby's brain grows rapidly, this early fusion forces the skull to grow in other directions, resulting in an abnormal head shape.
Is an abnormal head shape always craniosynostosis?
No, an abnormal head shape can also be caused by positional plagiocephaly, commonly known as flat head syndrome. A craniofacial specialist can determine whether the shape is due to a baby's sleeping position or true suture fusion.
What treatments are available for craniosynostosis?
Treatment typically involves surgery to correct the skull shape and make room for the brain to grow. Depending on the child's specific case, options may include minimally invasive endoscopic strip craniectomy, spring-mediated cranioplasty, or open cranial vault reconstruction.
Which doctors will treat my baby for craniosynostosis?
Your baby's care will be managed by a multidisciplinary craniofacial team. This core team usually includes a pediatric neurosurgeon, a plastic surgeon, and a pediatric anesthesiologist.
Will my baby need to wear a helmet after craniosynostosis surgery?
Some surgical treatments, particularly minimally invasive endoscopic procedures, require post-operative helmet therapy to help guide the skull's ongoing growth. Your surgical team will explain if a helmet is necessary for your child's specific treatment plan.

Questions for Your Doctor

  • • What is the specific diagnosis for my child's head shape, and which sutures are involved?
  • • What is the optimal window of time for surgical intervention in our specific case?
  • • How many of these procedures does your surgical team perform annually?
  • • Who are the core members of the multidisciplinary team that will be managing my child's care?

Questions for You

  • • What specific changes in my baby's head shape have I noticed, and when did I first see them?
  • • Have I noticed any other physical features, such as the shape of my baby's hands or feet, that I should mention to the doctor?
  • • What support systems (family, friends, or hospital social workers) do I have in place to help me manage the stress of this diagnosis?

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The First Steps: Understanding Your Baby's Diagnosis

References

  1. 1

    [Non syndromic craniosynostosis].

    Bennis Y, Wolber A, Vinchon M, et al.

    Annales de chirurgie plastique et esthetique 2016; (61(5)):389-407 doi:10.1016/j.anplas.2016.07.004.

    PMID: 27499256
  2. 2

    Evidence-Based Medicine: Nonsyndromic Craniosynostosis.

    Tahiri Y, Bartlett SP, Gilardino MS

    Plastic and reconstructive surgery 2017; (140(1)):177e-191e doi:10.1097/PRS.0000000000003473.

    PMID: 28654618

This guide is for informational purposes only and does not replace professional medical advice. Always consult your pediatric neurosurgeon or craniofacial specialist regarding your baby's specific diagnosis and treatment plan.

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