Frequency of Office Visits
- Multidisciplinary clinic every 6–12 months: In the authors’ center the first outpatient visit is usually at 3 months, followed by 6-month or annual review. The clinic is multidisciplinary with plastic surgical, neurosurgical, ophthalmological, psychological, and genetic services in the core team. ENT input may be necessary in those patients with airway concerns or tracheostomies.
Frequency of Imaging
- CT first year after surgery and then as needed: Postoperative CT scanning with 3D reconstruction would initially be carried out during the first postoperative year. Further scanning will depend on the clinical state, with the onset of headache, visual disturbance, or behavioral concerns being an indication for urgent CT scanning. MRI scanning is indicated if there are clinical concerns relating to the craniocervical junction.
Other Investigations Required
- Developmental assessment: A local pediatrician should be involved in the general care and developmental assessment of the child, linking with the specialist craniofacial center as necessary.
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