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Frequently Asked Questions - For Parents

What is craniosynostosis?

Craniosynostosis is an abnormally early fusion of bones on the skull. When an infant is born, the skull is made up of several separate bones. Over time, these bones join together to form the mature skull. With craniosynostosis, the bones fuse together early — often before the baby is born — instead of joining together later on in life. The result is an abnormal growth of the head afterward so that the shape of the head is very different than normal.

What is sagittal synostosis?

The most common form of craniosynostosis. Sagittal synostosis occurs when the suture in the midline of skull that runs right along the top of the head fuses early. The result is an oblong-shaped head. It may look almost like the keel of a boat, or a football.

When would parents suspect that their baby would have such an issue?

Early on. This deformity can be detected very soon after birth. Often the pediatrician or parents can see an abnormally shaped head and realize that there is this condition. The pediatrician would then refer you to a craniofacial specialist.

When should my child see a craniofacial team?

The optimal time for the first evaluation is within your child's first few weeks of life. The focus of the team visit is to help correct your child's physical problems, as well as facilitate adaptation at each stage of life. Usually, your child will be seen at frequent intervals as an infant and then on an annual, or semi-annual basis thereafter.

How can I have my child evaluated at Johns Hopkins?

We have a multi-disciplinary craniofacial clinic that includes Dr Edward Ahn, pediatric neurosurgeon, and Dr Amir Dorafshar and Dr Richard Redett, craniofacial plastic surgeons. To make an appointment with the craniofacial clinic, call 410-502-7700.

Is my child a candidate for minimally invasive surgery?

The optimal time to perform an endoscopy (minimally invasive surgery) is before the child is three months old because the bones are still very soft and moldable.

Will this impact my child’s brain development?

The shape of your child’s skull has no direct correlation with their developmental process. Often the skull will accommodate brain growth if only one suture is fused, as is most often the case. However, less frequently, multiple sutures are fused. In these cases, there can be a restriction in the volume available for brain growth and development may be impaired. There is often an association between craniofacial syndromes and neurological development. The degree of the problem is dependent on the severity of the condition, the number of sutures that are fused, and the presence of brain or other organ system problems that could affect the child.

A child with craniosynostosis requires frequent medical evaluations to ensure that the skull, facial bones, and brain are developing normally. Our medical team will work with you directly to provide education and guidance to improve the health and well being of your child.

How long will my child wear a helmet?

The helmet is only used after minimally invasive endoscopic surgery. The average treatment with a helmet after minimally invasive surgery is usually nine to twelve months, depending on the age of the infant and the severity of the condition. Careful and frequent monitoring is required. Learn more about helmet molding therapy.

Will my child need to wear a helmet after open surgery?

No. During traditional surgery, the shape of the head is corrected by moving the area that is abnormally fused or prematurely fused and then reshaping the skull so it is more rounded.

Will I be able to donate blood directly to my child for their surgery?

Johns Hopkins Medicine does not have a “directed” blood donation mechanism in place. However, others have gone through the autologous blood donation (“directed donation”) process with the American Red Cross prior to surgery. Please speak to your physician or call the American Red Cross Autologous Donations Department at 1-800-240-8169.

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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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