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How is craniosynostosis treated? Why?

Surgical treatment is recommended when craniosynostosis affects the shape of the head in a significant way. The more the shape of the head is affected, the greater the worry about the effect on the child’s brain. 

Surgery is believed to give a child the best possible chance to develop normally. It also normalizes the child’s appearance. An unusual head shape can have profound effects on a child’s personality, self esteem, and social interactions. 


What type of surgery is recommended?
There are two approaches offered at the Center for Craniofacial Care to repair craniosynostosis: Minimally Invasive Surgery and Cranial Vault Remodeling.


Minimally Invasive Surgery

In minimally invasive surgery for craniosynostosis, the surgical team removes the involved fused suture through one or two smaller cuts (incisions). The surgery does not involve active reshaping of the head. Instead, your baby wears a helmet to mold his/her head to a more normal shape in the months after surgery. This may be a treatment option if your baby is 6 months or younger. After 6 months, a baby’s head does not grow as fast and helmets are not as effective.

What is helmet therapy?
About three to four days after endoscopic strip surgery, your baby will be measured for a helmet.  The specialist who measures and makes the helmet is known as an “orthotist”. Using gentle pressure, the helmet molds your baby’s head to a more normal shape as the skull heals and grows. It also keeps the suture from fusing again too soon.
Babies wear the helmet for at least three months and sometimes for up to a year. Your baby will wear the helmet 23 hours a day, at all times except during bathing. Babies may need a new helmet made every several months to keep up with the growth of their head.

Cranial Vault Remodeling
The goal of craniosynostosis surgery is to expand the volume of the skull, thereby relieving pressure on the brain. This also creates a normal head shape.  The operation is called “cranial vault remodeling.” Current evidence suggests that the skull does not grow normally in the affected region. A slight overcorrection of the head shape is performed at the initial surgery to allow for future growth. 
Surgery is performed by the craniofacial surgeon and the pediatric neurosurgeon working together. Each specialist performs the part of the operation where he or she is most expert. Working efficiently together as a team, the surgeons are able to reduce the amount of time a child requires under anesthesia. Average surgical times at our hospital are around 3 hours.  At our center, only specially trained pediatric anesthesiologists experienced in craniosynostosis work with our children.

How do I know which surgery to choose?
If your baby is younger than 6 months, you may te minimally invasive surgery or choose to have cranial vault remodeling. Both procedures have benefits and risks.  The benefits of the minimally invasive procedure may include smaller incisions, less scarring, and less bleeding. This may lead to a lower transfusion rate.  The average hospital stay is one night.  At our hospital, children who undergo cranial vault remodeling usually spend 2 nights in the hospital.   Through the use of our CHoR protocol to minimize blood loss, most children do not require a transfusion.  Post-operative helmets are not necessary with this technique.
Some family prefer the possible benefits of the minimally invasive option and others prefer the benefits of the cranial vault remodeling.  At the Center for Craniofacial Care, our pediatric craniofacial and neurosurgeons are experienced in both procedures and will discuss the treatment options for your family.

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At what age is surgery recommended?
Surgical treatment is generally performed before the child reaches a year of age.  Exact timing is based on which suture or sutures are fused, and can vary from 2 to 10 months of age. If all the sutures are fused, earlier treatment may be recommended. When children are diagnosed after 1 year of age, operative treatment may be recommended at the time of diagnosis.

Once the surgery is scheduled, what should families expect?
Once a child is scheduled for surgery, an appointment is scheduled with the surgeons. Families are given as much time as needed to feel comfortable with the treatment plan and have all their questions answered. In addition, families are provided with written information about the surgery and hospitalization. There is a chance that a child may require a blood transfusion. If a family chooses to donate blood, our coordinators can help set up the donation at the best time.

Guidance is available on how to discuss treatment with children and siblings. 
Please see Preparing Your Child for Surgery section for further details. 

What should families expect on the day of surgery?
Nothing that may cause pain to a child is done while awake. Children go to sleep by breathing in an anesthetic gas and then the IV is placed and any needed lab work is completed.

During the surgery, no hair is shaved. We do not use bandages or plastic drains in young children. 

Parents are given a pager to carry and given updates every hour. After the operation is completed, children are brought to the pediatric intensive care unit (PICU) for careful monitoring.

At home, families are asked to wash their child’s hair every other day. Regular baby shampoo is used. There is no other special care needed.  Follow up appointments are scheduled 2-3 weeks after the surgery. 

Please see our Preparing for Surgery section for more information.


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