Outcomes for Syndromic Craniosynostosis in Children

This page was last updated on May 9th, 2017

Outcome After Surgery

It is an old saying in craniofacial surgery that if one starts off with a good-looking child, one will end up with an even better-looking one. In most craniofacial centers, children are followed up well into their teens and early adulthood.

  • Many syndromes associated with low IQ: Early craniofacial intervention does not prevent mental retardation, and studies of children who underwent craniofacial surgery during infancy to correct craniosynostosis still show a significant percentage of patients with IQs < 70, dependent upon the syndrome.
  • Varies with syndrome: Patients with syndromic craniosynostosis are a large and heterogeneous group. Although outcome classification is difficult in craniofacial surgery, these long-term follow-ups have shown that aesthetic outcome and development depend on the syndrome involved.
  • Crouzon syndrome outcome good: Children with Crouzon syndrome have the highest potential for normal development and a good aesthetic result, the latter depending on the severity of the gene penetrance (20).
  • Apert syndrome requires multiple surgeries: Children with Apert syndrome have a poorer overall intelligence level and often need several operations to improve facial features (54).