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Treatment Options

Management of craniosynostosis:

Specific treatment for craniosynostosis will be determined by your child's physician 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. Learn about surgical treatment options.

In general, the optimal time to perform surgery is before the child is 1 year of age since the bones are still very soft and easy to work with. Surgery may be necessary at a much earlier age depending upon the severity of the condition. In many cases, surgery can be performed as early as 1 month of age.  Therefore, an early diagnosis and consultation with a specialist are important.

Before surgery, your child's physician 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/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:

  • fever (greater than 101F)
  • vomiting
  • headache
  • irritability
  • redness and swelling along the incision areas
  • decreased alertness
  • fatigue

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.

»» Surgical Options

»» Molding Helmet Therapy

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 physician 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.

 

Craniosynostosis Resources:

Pediatric Neurosurgery | Craniosynostosis

Johns Hopkins neurosurgeon, Dr. Edward Ahn answers questions about what craniosynostosis is, how it is diagnosed and treated, what the prognosis is for children with the condition, and why you should consider Johns Hopkins for treatment.

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Craniosynostosis | Jack's Story

Born with pediatric craniosynostosis, Jack had minimally invasive surgery as an infant, performed by pediatric neurosurgeon Dr. Edward Ahn.

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Listen to pediatric neurosurgeon Dr. Edward Ahn talk about positional plagiocephaly and craniosynostosis in infants.

Watch the recording of Dr. Ahn’s online discussion about craniosynostosis.

 

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