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PubMed This is a summary of 18 peer-reviewed journal articles Updated
Plastic Surgery

Building Your Multidisciplinary Care Team

At a Glance

Children with Apert syndrome require a coordinated multidisciplinary care team at a specialized craniofacial reference center. Core specialists include craniofacial surgeons, neurosurgeons, and ENTs who collaborate on a long-term, standardized treatment roadmap.

Because Apert syndrome is a complex, multisystem condition, it cannot be managed by a single doctor. Your child requires a multidisciplinary care team—a group of specialists from different fields who work together to coordinate every aspect of your child’s health from birth through adulthood [1][2].

The Core Specialist Team

A high-volume craniofacial center will typically include the following experts:

  • Craniofacial Surgeon (Plastic Surgeon): Leads the surgical planning for the face, skull, and hands [3].
  • Neurosurgeon: Partners with the craniofacial surgeon to safely expand the skull and protect the brain [4].
  • Geneticist: Confirms the diagnosis and provides information on the FGFR2 mutation and future family planning [5].
  • Hand and Orthopedic Surgeons: Specialize in separating fused fingers and toes and managing joint mobility in the shoulders or elbows [6][7].
  • Otolaryngologist (ENT) and Pulmonologist: Manage airway health, monitor for sleep apnea, and check hearing [8][9].
  • Pediatric Dentist and Orthodontist: Monitor jaw growth, dental alignment, and the health of the palate [2][10].
  • Speech and Occupational Therapists: Support early communication and fine motor development [11][12].
  • Medical Social Worker & Care Coordinator: Essential partners who help you navigate insurance, schedule complex interdisciplinary appointments, and access early intervention services in your local area [2].

Why “Reference Centers” Matter

It is highly recommended that you seek care at a specialized national reference center or a high-volume children’s hospital. These centers manage many cases of Apert syndrome each year and follow systematic protocols—standardized plans that ensure surgeries are done in the right order at the right time [13][12].

Studies show that clinical outcomes are superior when children are managed by experienced teams that follow these birth-to-maturity “roadmaps” [12][14]. For example, a specialized center will have a clear, evidence-based plan for performing early cranial expansion to protect the brain, while carefully delaying midface advancement until the appropriate stage of growth [13][15].

Vetting Your Care Team

When meeting with a potential craniofacial team, use these questions to ensure they have the necessary expertise for Apert syndrome:

  1. Experience: “How many children with Apert syndrome does your team currently follow, and how many new cases do you see each year?” [12]
  2. Coordination: “Do you have a dedicated craniofacial coordinator to help us manage appointments across all these different specialties?”
  3. Safety: “Are your pediatric anesthesiologists specifically experienced in managing the complex airways often seen in children with Apert syndrome?” [16]
  4. Long-term Vision: “Can you walk us through your center’s standardized surgical roadmap for a child with Apert syndrome over the next 10 to 15 years?” [13]
  5. Monitoring: “What is your specific protocol for monitoring my child for increased intracranial pressure (ICP) as they grow?” [4][17]

Finding a team that you trust and that demonstrates a deep, systematic understanding of Apert syndrome is the most important step you can take in your child’s first few months [12][18].

Common questions in this guide

What doctors treat Apert syndrome?
Apert syndrome is managed by a multidisciplinary group of specialists rather than a single doctor. The core team typically includes a craniofacial surgeon, neurosurgeon, geneticist, hand and orthopedic surgeons, ENT, pulmonologist, and dental experts.
Why is a specialized reference center important for Apert syndrome care?
High-volume centers manage many cases of Apert syndrome and use standardized treatment roadmaps. Research shows that children have better outcomes when cared for by experienced teams that follow systematic surgical protocols from birth to adulthood.
What is the role of a craniofacial coordinator?
A craniofacial coordinator or medical social worker serves as your primary point of contact. They help families navigate insurance, schedule complex appointments across multiple specialties, and access early intervention services locally.
How will the care team monitor and protect my child's brain?
The team's neurosurgeon and craniofacial surgeon work together to plan early cranial expansion surgeries. They also use specific monitoring protocols to detect signs of increased intracranial pressure as your child grows.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Who is our primary point of contact or 'craniofacial coordinator' on the team?
  2. 2.How often does the entire multidisciplinary team meet to review my child's progress together?
  3. 3.Does your center follow a standardized 'roadmap' or protocol for Apert syndrome from birth through age 21?
  4. 4.What is the team's typical timeline for early cranial expansion versus midface advancement, and why?
  5. 5.What is your team's protocol for monitoring and detecting signs of increased intracranial pressure (ICP)?

Questions For You

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

References

References (18)
  1. 1

    Unraveling the Complexity of Apert Syndrome: Genetics, Clinical Insights, and Future Frontiers.

    Kumari K, Saleh I, Taslim S, et al.

    Cureus 2023; (15(10)):e47281 doi:10.7759/cureus.47281.

    PMID: 38021759
  2. 2

    Apert Syndrome: An Insight Into Dentofacial Features.

    Jose B, Emmatty TB, Methippara JJ, et al.

    Cureus 2021; (13(9)):e17735 doi:10.7759/cureus.17735.

    PMID: 34659949
  3. 3

    Optimising anaesthetic management during fronto-orbital advancement in an infant with Apert syndrome.

    Florendo GL, Jose GRB

    BMJ case reports 2025; (18(9)) doi:10.1136/bcr-2025-266714.

    PMID: 40953851
  4. 4

    Apert syndrome: neurosurgical outcomes and complications following posterior vault distraction osteogenesis.

    Raposo-Amaral CE, Vincenzi-Lemes M, Medeiros ML, et al.

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2024; (40(8)):2557-2563 doi:10.1007/s00381-024-06436-2.

    PMID: 38700706
  5. 5

    Apert syndrome without craniosynostosis.

    de Ângelis Ramos D, Matushita H, Cardeal DD, et al.

    Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery 2019; (35(3)):565-567 doi:10.1007/s00381-019-04050-1.

    PMID: 30643948
  6. 6

    Apert Syndrome Type III Hand: Prevalence and Outcomes.

    Raposo-Amaral CE, Medeiros LL, Raposo-Amaral CA

    The Journal of craniofacial surgery 2023; (34(4)):1170-1173 doi:10.1097/SCS.0000000000009107.

    PMID: 36730868
  7. 7

    Contemporary Management of the Upper Limb in Apert Syndrome: A Review.

    Khabyeh-Hasbani N, Lu YH, Baumgartner W, et al.

    Plastic and reconstructive surgery. Global open 2024; (12(8)):e6067 doi:10.1097/GOX.0000000000006067.

    PMID: 39148509
  8. 8

    Airway Analysis in Apert Syndrome.

    Forte AJ, Lu X, Hashim PW, et al.

    Plastic and reconstructive surgery 2019; (144(3)):704-709 doi:10.1097/PRS.0000000000005937.

    PMID: 31461034
  9. 9

    Genetic Subtypes of Apert Syndrome Are Associated With Differences in Airway Morphology and Early Upper Airway Obstruction.

    Wagner CS, Wietlisbach LE, Kota A, et al.

    The Journal of craniofacial surgery 2023; (34(7)):1999-2003 doi:10.1097/SCS.0000000000009583.

    PMID: 37582295
  10. 10

    Aberrant growth of the anterior cranial base relevant to severe midface hypoplasia of Apert syndrome.

    Cha BK, Choi DS, Jang IS, et al.

    Maxillofacial plastic and reconstructive surgery 2018; (40(1)):40 doi:10.1186/s40902-018-0179-8.

    PMID: 30591916
  11. 11

    A longitudinal study of the role of fingers in the development of early number and arithmetic skills in children with Apert syndrome.

    Hilton C

    Journal of anatomy 2024; (245(6)):914-929 doi:10.1111/joa.14111.

    PMID: 39152701
  12. 12

    Apert Syndrome: Outcomes From the Australian Craniofacial Unit's Birth to Maturity Management Protocol.

    David DJ, Anderson P, Flapper W, et al.

    The Journal of craniofacial surgery 2016; (27(5)):1125-34 doi:10.1097/SCS.0000000000002709.

    PMID: 27380568
  13. 13

    Respiratory and craniofacial management in children with Apert syndrome.

    Khirani S, Paternoster G, Luscan R, et al.

    Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery 2025; (53(8)):1080-1087 doi:10.1016/j.jcms.2025.03.019.

    PMID: 40246667
  14. 14

    Multidisciplinary care of craniosynostosis.

    Buchanan EP, Xue Y, Xue AS, et al.

    Journal of multidisciplinary healthcare 2017; (10()):263-270 doi:10.2147/JMDH.S100248.

    PMID: 28740400
  15. 15

    Long-term Management of a Patient with Apert Syndrome.

    Horiuchi S, Sato H, Iwasa A, et al.

    The journal of contemporary dental practice 2021; (22(10)):1184-1190.

    PMID: 35197388
  16. 16

    Alternative Methods for Nasotracheal Intubation and Extubation in a Patient With Apert Syndrome.

    Tsukamoto M, Yokoyama T

    Anesthesia progress 2015; (62(3)):122-4 doi:10.2344/0003-3006-62.3.122.

    PMID: 26398130
  17. 17

    Apert syndrome: Surgical outcomes and perspectives.

    Breik O, Mahindu A, Moore MH, et al.

    Journal of cranio-maxillo-facial surgery : official publication of the European Association for Cranio-Maxillo-Facial Surgery 2016; (44(9)):1238-45.

    PMID: 27378001
  18. 18

    Catastrophic and Critical Intraoperative Events during Pediatric Craniofacial Surgery.

    Kennedy D, Novak CB, Phillips JH, et al.

    Plastic and reconstructive surgery. Global open 2023; (11(1)):e4784 doi:10.1097/GOX.0000000000004784.

    PMID: 36699209

This page provides educational information about building a care team for Apert syndrome. Always consult with a specialized craniofacial center for your child's specific medical management and treatment plan.

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