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.

craniosynostosis surgery

Surgeons work according to their own timelines, the outcomes of their own patients and the results that they have experienced based on their own observations. If waiting for your child’s surgeon to make a decision is causing distress, please indicate this to your specialist before seeking out a new surgeon for your child.

Many times a family will get upset when the child requires a second surgery and will inaccurately perceive this to be the fault of the surgeon. These families will subsequently seek out a second, third or fourth opinion from a variety of other specialists and use a surgeon whose timeline makes them feel more comfortable. While we understand the need for second opinions, we urge each family to discuss the findings and recommendations of all other opinions with the treating surgeon.

More often than not, when a second surgery is performed and the child recovers, the family begins to believe that the first surgery was done incorrectly. It is extremely important for all families to be informed prior to making such a claim or giving in to these feelings. Feelings that you did something wrong or that you did not seek out the “best” surgeon for your child is often an inaccurate perception of circumstances. Chances are, your child is just “one of the 30% that will require a second surgery” and that the outcome of this second surgery would be favorable whether your child had surgery with the treating team or a new surgeon.

We encourage each of you to discuss your feelings with your team. If you find it difficult to be honest with your surgeon, we can help you. CAPPSKIDS.ORG can assist you in communicating with your team.  We can help bridge the gap in this conversation.

Please do you best to stay close to home if at all possible.

Please do not ever blame yourself and always, always advocate for your child.

CAPPSKIDS is here for the families.