Craniosynostosis is a craniofacial disorder that requires follow up and monitoring through adulthood. While causes and underlying genetic factors are still being studied, there is still much uncertainty surrounding Craniosynostosis, timing and outcomes of surgery.
Outcomes will vary based on many factors; age, technique, severity of deformity, suture(s) fused, etc.
It is very important that you bring up any and all concerns to your child’s treating specialist.
Our data collection has shown that up to 30% of the families surveyed have a child that required a secondary procedure.
The majority of these families were not dissatisfied with their child’s initial treatment however, 10% chose to have their child treated elsewhere due to the following reasons;
- wait and see protocol of treating specialist
- feelings that specialist did not take post-op contour of child’s head as seriously as parents
- Please keep in mind that no surgeon can predict how a child’s bone will grow after surgery. Through experience and the many studies out there, technique is ever evolving.
CAPPSKIDS.ORG strongly advocates for families to communicate with their treating specialist keeping in mind that regression of deformity, contour concerns, skull irregularities and other can occur.
