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PubMed This is a summary of 15 peer-reviewed journal articles Updated
Pediatric Neurosurgery · Syndromic Craniosynostosis

How Many Surgeries for Syndromic Craniosynostosis?

At a Glance

Children with syndromic craniosynostosis almost always need multiple surgeries in a staged approach. Infant surgeries expand the skull to protect the growing brain, while later childhood surgeries advance facial bones to improve breathing. Timing is customized to your child's growth.

In this answer

3 sections

01

Stage 1: Protecting the Brain (Infancy)

02

Stage 2: Supporting Breathing and Facial Growth (Childhood and Adolescence)

03

Managing Expectations

Yes, it is highly likely that your child will need more than one surgery. Syndromic craniosynostosis is almost never a condition that can be resolved in a single operation. Instead, craniofacial teams rely on a staged surgical approach—a planned, customized series of procedures taking place over several stages of your child’s development, from infancy through adolescence [1][2].

The reason multiple surgeries are required is that your child’s brain and facial bones are constantly growing and changing. What works to protect an infant’s brain will not necessarily support the breathing and structural needs of a growing child. Furthermore, depending on your child’s specific syndrome, they may also need separate, less urgent procedures to address physical differences like shortened fingers or toes (brachydactyly), though the primary life-saving focus is on the skull and airway.

Stage 1: Protecting the Brain (Infancy)

During your child’s first year or two of life, the absolute highest priority is protecting their growing brain. Because syndromic craniosynostosis causes the skull bones to fuse too early, it can restrict brain growth and increase pressure inside the skull.

The initial surgeries focus on cranial vault expansion—procedures designed to enlarge the skull, relieve intracranial pressure, and manage related issues like fluid buildup in the brain (hydrocephalus) [3][4].

  • Posterior Cranial Vault Distraction Osteogenesis (PVDO): Many craniofacial centers favor this technique for the first surgery, often performed between 3 and 6 months of age [5][6]. It involves placing distraction devices in the back of the skull. Over a few weeks, these devices are gradually expanded (often by the parents turning a small screw at home) to slowly create essential space for the brain. After the bone has healed, a second, much shorter surgery is required to remove the devices [7].
  • Fronto-Orbital Advancement (FOA): Following the expansion of the back of the head, a second major surgery is often needed between 9 and 15 months of age. This procedure expands the forehead (anterior skull) to allow the frontal lobes of the brain to grow and helps protect protruding eyes [8].

These early procedures typically require a few days of recovery in the Pediatric Intensive Care Unit (PICU), followed by a short stay on the regular pediatric floor before going home.

Stage 2: Supporting Breathing and Facial Growth (Childhood and Adolescence)

While early surgeries focus on the skull and brain, later procedures shift focus to the face and airway. In syndromic craniosynostosis, the bones in the middle of the face often grow much slower than the rest of the head.

As your child reaches early-to-mid childhood, or sometimes their teenage years, they will likely need a midface advancement [9][1]. Procedures like a Le Fort III distraction or monobloc advancement gently pull the facial bones forward over time [10][11]. Moving the midface forward is crucial because it:

  • Enlarges the upper airway and improves breathing [12][13]
  • Addresses obstructive sleep apnea [10][11]
  • Protects the eyes by bringing the cheekbones forward to better support them [12][13]
  • Aligns the jaw for better chewing and dental health

(Note: If your infant has severe breathing issues before they are old enough for a midface advancement, alternative interventions like CPAP therapy or a temporary tracheostomy might be used to support them).

Managing Expectations

It is helpful to think of your child’s surgical journey as a marathon, not a sprint. The timing and exact number of surgeries will be completely personalized to how your child’s unique body grows [9][2]. Along the way, unplanned revision surgeries may sometimes be necessary to address new pressure issues or changes in bone growth [14][15]. By working closely with a dedicated multidisciplinary craniofacial team—which usually includes a pediatric neurosurgeon and a craniofacial plastic surgeon—you can prepare for each stage of this journey as it comes.

Common questions in this guide

Will my child need more than one surgery for syndromic craniosynostosis?
Yes, syndromic craniosynostosis almost never resolves in a single operation. Because your child's brain and facial bones are constantly growing, craniofacial teams use a planned, staged series of surgeries from infancy through adolescence to support their development.
What is the focus of the first surgeries my baby will have?
During your child's first year, the primary goal is protecting their growing brain. Procedures like Posterior Cranial Vault Distraction Osteogenesis (PVDO) or Fronto-Orbital Advancement (FOA) are performed to enlarge the skull and relieve dangerous pressure on the brain.
Why are more surgeries needed when my child gets older?
In syndromic craniosynostosis, the midface bones often grow much slower than the rest of the head. Surgeries like a midface advancement are performed in childhood or adolescence to enlarge the airway, resolve sleep apnea, protect protruding eyes, and properly align the jaw.
What signs or symptoms should I watch for at home between surgeries?
Parents should monitor for unexpected changes in breathing, particularly during sleep, such as new snoring or breathing pauses. Additionally, watch for unusual irritability, frequent head rubbing, or sudden vomiting, which can be warning signs of increased pressure inside the skull.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What signs or symptoms of increased intracranial pressure should I watch for at home between surgeries?
  2. 2.Are you recommending Posterior Cranial Vault Distraction (PVDO) or Fronto-Orbital Advancement (FOA) for my child's first surgery, and why?
  3. 3.If my child needs distraction devices, will we be turning the expanders at home, and who will train us to do this?
  4. 4.How often will we need to do sleep studies to monitor for sleep apnea before midface advancement is needed?
  5. 5.Which specialists (e.g., neurosurgeon, craniofacial plastic surgeon, orthodontist) will be directly involved in our long-term care plan?

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

Does Craniosynostosis Syndrome Cause Sleep Apnea?How to Choose a Craniosynostosis Surgery Center?Is Craniosynostosis-Dysmorphism-Brachydactyly Inherited?Hearing & Dental Issues in Gorlin-Chaudhry-Moss SyndromeWhat Syndromes Cause Craniosynostosis & Brachydactyly?What Are the Signs of High ICP in Craniosynostosis?What are dysmorphism & brachydactyly in craniosynostosis?What Genetic Tests for Craniosynostosis & Brachydactyly?What If Craniosynostosis Genetic Testing Is Negative?CVR vs. Distraction Osteogenesis for CraniosynostosisWhat is the Fontaine Progeroid Life Expectancy?Why Do Kids With Craniosynostosis Need Eye Exams?

References

References (15)
  1. 1

    Syndromic Craniosynostosis: A Comprehensive Review.

    Katouni K, Nikolaou A, Mariolis T, et al.

    Cureus 2023; (15(12)):e50448 doi:10.7759/cureus.50448.

    PMID: 38222144
  2. 2

    Syndromic Craniosynostosis.

    Sawh-Martinez R, Steinbacher DM

    Clinics in plastic surgery 2019; (46(2)):141-155 doi:10.1016/j.cps.2018.11.009.

    PMID: 30851747
  3. 3

    Highlighting posterior cranial vault expansion remodeling for treating various types of craniosynostosis in children.

    Yuan Y, Li Z, Gao F, et al.

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2025; (41(1)):235 doi:10.1007/s00381-025-06891-5.

    PMID: 40668396
  4. 4

    Free-floating bone flap posterior cranial vault release in syndromic craniosynostosis.

    Liang QC, Kang X, Gao PP, et al.

    Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery 2025; (53(2)):114-121 doi:10.1016/j.jcms.2024.11.009.

    PMID: 39592376
  5. 5

    Early posterior vault distraction osteogenesis changes the syndromic craniosynostosis treatment paradigm: long-term outcomes of a 23-year cohort study.

    Wu M, Barnett SL, Massenburg BB, et al.

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2024; (40(9)):2811-2823 doi:10.1007/s00381-024-06465-x.

    PMID: 38904767
  6. 6

    Posterior vault distraction osteogenesis: indications and expectations.

    Carlson AR, Taylor JA

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2021; (37(10)):3119-3125 doi:10.1007/s00381-021-05118-7.

    PMID: 33743044
  7. 7

    Morbidity Associated With Anterior Versus Posterior Cranial Vault Expansion for Early Treatment of Syndromic Craniosynostosis: A Systematic Review and Meta-Analysis.

    Richardson IJ, Wager LE, Recker MJ, et al.

    Journal of oral and maxillofacial surgery : official journal of the American Association of Oral and Maxillofacial Surgeons 2022; (80(4)):651-661 doi:10.1016/j.joms.2021.10.022.

    PMID: 34863645
  8. 8

    An Algorithm for Managing Syndromic Craniosynostosis Using Posterior Vault Distraction Osteogenesis.

    Swanson JW, Samra F, Bauder A, et al.

    Plastic and reconstructive surgery 2016; (137(5)):829e-841e doi:10.1097/PRS.0000000000002127.

    PMID: 27119945
  9. 9

    Apert syndrome: Cranial procedures and brain malformations in a series of patients.

    Munarriz PM, Pascual B, Castaño-Leon AM, et al.

    Surgical neurology international 2020; (11()):361 doi:10.25259/SNI_413_2020.

    PMID: 33194294
  10. 10

    Impact of Lefort III/ monobloc advancement on midface growth in children with syndromic craniosynostosis: A systematic review.

    Jayakumar NK, Pendem S, Vudatha RP, Muthu MS

    Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery 2025; (53(5)):568-575 doi:10.1016/j.jcms.2025.01.001.

    PMID: 39915153
  11. 11

    [Application and development of orthognathic surgery in treatment of syndromic craniosynostosis].

    Zhao C, Teng L

    Zhongguo xiu fu chong jian wai ke za zhi = Zhongguo xiufu chongjian waike zazhi = Chinese journal of reparative and reconstructive surgery 2023; (37(7)):879-884 doi:10.7507/1002-1892.202302102.

    PMID: 37460186
  12. 12

    Clinical analysis of Le Fort III distraction for obstructive sleep apnea in pediatric patients with syndromic craniosynostosis.

    Liu Y, Xu T, Zhang Y, Liu XJ

    Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery 2024; (52(11)):1360-1366 doi:10.1016/j.jcms.2024.04.002.

    PMID: 39256143
  13. 13

    Retroposition of the Globe After Le Fort III Midfacial Distraction.

    Resnick CM, Salcines A, Hughes CD, et al.

    The Journal of craniofacial surgery 2019; (30(2)):358-362 doi:10.1097/SCS.0000000000005027.

    PMID: 30531276
  14. 14

    The Need for Additional Surgery after Passive versus Active Approaches to Syndromic Craniosynostosis: A Meta-analysis.

    Grosser JA, Kogan S, Layton RG, et al.

    Plastic and reconstructive surgery. Global open 2023; (11(3)):e4891 doi:10.1097/GOX.0000000000004891.

    PMID: 36936458
  15. 15

    Evaluating Trends in Headache and Revision Surgery following Cranial Vault Remodeling for Craniosynostosis.

    Pellicer E, Siebold BS, Birgfeld CB, Gallagher ER

    Plastic and reconstructive surgery 2018; (141(3)):725-734 doi:10.1097/PRS.0000000000004180.

    PMID: 29481403

This timeline is for educational purposes only. The exact number, timing, and type of syndromic craniosynostosis surgeries depend on your child's unique growth and must be determined by their specialized craniofacial team.

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