Management of craniosynostosis
Specific treatment for craniosynostosis will be determined by your child's doctor based on:
Your child's age, overall health, and medical history
Extent of the craniosynostosis
Type of craniosynostosis (which sutures are involved)
Your child's tolerance for specific medications, procedures, or therapies
Expectations for the course of the craniosynostosis
Your opinion or preference
Surgery is typically the recommended treatment. The goal of treatment is to reduce the pressure in the head and correct the deformities of the face and skull bones. Less commonly, surgery is needed to decrease pressure within the skull.
The optimal time to perform surgery is before the child is 1 year of age since the bones are still very soft, have not fused at other sutures, and are easy to work with. Surgery may be necessary at a much earlier age depending on the severity of the condition. Because blood loss can be an issue in this type of surgery, surgery is often delayed in the very young child to allow some growth and development and a greater blood volume. Most procedures are done between 3 and 8 months of age.
Before surgery, your child's doctor will explain the operation and may review "before and after" photographs of children who may have had a similar type of surgery.
Following the operation, it is common for the child to have a turban-like dressing around his or her head. The face and eyelids may be swollen after this type of surgery. The child is typically transferred to the intensive care unit (ICU) after the operation for close monitoring.
Problems after surgery may occur suddenly or over a period of time. The child may experience any or all of the following complications:
These complications require prompt evaluation by your child's surgeon. The health care team educates the family after surgery on how to best care for their child at home, and outlines specific problems that require immediate medical attention.
Life-long considerations for a child with craniosynostosis
The key to treating craniosynostosis is early detection and treatment. Some forms of craniosynostosis can affect the brain and development of a child. The degree of the problems is dependent on the severity of the craniosynostosis, the number of sutures that are fused, and the presence of brain or other organ system problems that could affect the child.
Genetic counseling may be recommended by the doctor to evaluate the parents of the child for any hereditary disorders that may tend to run in families.
A child with craniosynostosis requires frequent medical evaluations to ensure that the skull, facial bones, and brain are developing normally. The medical team works with the child's family to provide education and guidance to improve the health and well-being of the child.