How Craniosynostosis Is Treated

Your child’s craniosynostosis treatment will depend on their age, when they were diagnosed, and how severe their skull malformation is. It usually involves surgery to both correct the shape of the skull and to allow room for the baby’s brain to grow. Surgery is also effective at relieving any increased pressure on the brain.

The goal of craniosynostosis surgery is to achieve normal brain development by providing enough space for your little one’s brain to grow. Without treatment, the brain may continue to grow in a confined space, leading to increased pressure in the skull. 

The two types of surgery for correcting craniosynostosis are endoscopic craniosynostosis surgery and calvarial vault remodeling. Helmet therapy is sometimes used as well. It may replace surgery in cases of mild craniosynostosis.

Doctor holding baby in office

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Surgeries and Specialist-Driven Procedures

Most types of craniosynostosis require surgery sometime during your child’s first year of life. The skull bones are still soft and flexible enough to be moved into a more circular shape before your child turns 1 year old. Depending on how severe your baby’s craniosynostosis is, your doctor may recommend surgery at 1 to 2 months old.

Rarely, craniosynostosis is caused by a genetic disorder. When this is the case, your surgeon will work with your genetic medical team to determine the safest time to perform surgery. 

Calvarial Vault Remodeling

Calvarial vault remodeling is usually performed when a baby is 6 months old. During the procedure, your child’s surgeon makes an incision into their scalp and then moves their skull bones into a circular shape. This surgery can take up to six hours and may require a blood transfusion.

After calvarial vault remodeling, a baby usually spends one night in the intensive care unit and is then moved to a regular hospital room. When you see your child after surgery, they will probably seem groggy from anesthesia. Their face, especially the eyelids, will look puffy. 

Follow-up appointments for calvarial vault remodeling are usually scheduled for one month, six months, and 12 months after surgery.

Endoscopic Craniosynostosis Surgery 

Endoscopic craniosynostosis surgery is usually performed when a child is between 2 to 4 months old. During endoscopic craniosynostosis surgery, your child’s surgeon makes several tiny incisions in their scalp and then uses a small tube called an endoscope to move the skull bones into a circular shape. This procedure usually takes about one hour to perform. 

After endoscopic craniosynostosis surgery, most children stay in the hospital for one night before being discharged home. After surgery, your child will need to wear a molding helmet to allow their skull bones to continue to grow in the correct shape. Your child will need to wear the helmet 24 hours a day, including while sleeping. 

Follow-up appointments for endoscopic craniosynostosis surgery are usually scheduled for three, six, nine, and 12 months after surgery. You will most likely have additional appointments with a helmet specialist during the recovery period as well.

Not all babies with craniosynostosis require surgery. If your child’s skull malformation is mild and not affecting their brain growth, your doctor may recommend avoiding surgery. As your little one gets bigger and grows more hair, their skull shape will be less noticeable.

The recovery process for calvarial vault remodeling or endoscopic craniosynostosis surgery varies for each child. Once your child has been discharged home from the hospital, they will have several follow-up appointments. During these appointments, the surgeon will examine their head shape, measure their head circumference, and monitor for any complications.

If your child underwent endoscopic craniosynostosis surgery, they will also have follow-up appointments with a helmet specialist to monitor their head growth and make changes as necessary. 

If your child’s craniosynostosis was caused by a genetic disorder, the doctor may recommend that the entire family undergo genetic testing to find out if the condition runs in your family. 

After surgery, your child’s medical team will closely monitor them for signs of infection or complications. Tell the doctor right away if your child develops any of the following signs:

  • Fever
  • Decreased alertness
  • Vomiting
  • Irritability
  • Redness and swelling at the incision site 

Helmet Therapy

Your doctor may recommend that your child wear a molding helmet to help to shape their skull. This is sometimes used for infants with mild craniosynostosis.

A cranial molding helmet is hard on the outside and has moldable foam on the inside. It is not painful to wear and does not press down on the skull. The goal of the helmet is to promote skull growth into a circular shape. 

Parents Need Support During the Treatment Process Too

Studies show that having a child with craniosynostosis is stressful for parents, especially when the skull abnormality is noticeable to others. Fortunately, there are steps you can take to make the treatment period a bit more tolerable. Because the first doctor’s appointment can be overwhelming, bring a list of questions so that you do not forget anything. Take notes during the visit about the treatment recommendations as well. 

Summary

Craniosynostosis is often treated with surgery. Your child may need calvarial vault remodeling or endoscopic craniosynostosis surgery. Both involve reshaping your child’s skull into a more circular shape. Your child will need to wear a helmet 24 hours a day, including while they are sleeping, after endoscopic craniosynostosis surgery. Mild cases of the condition may be treated with helmet therapy alone.

Frequently Asked Questions

Is the surgery for craniosynostosis brain surgery?

The surgery for craniosynostosis involves making an incision (or several small incisions) into the scalp and then moving the skull bones into a more circular shape. The goal is to provide enough room for the brain to grow, but the surgeon will not perform surgery directly on the brain. 

What should you expect after craniosynostosis surgery?

Each child’s recovery period after surgery will vary depending on their age and how severe the skull malformation is. After calvarial vault remodeling, your child will appear swollen, especially around their face and eyelids. Your child may require a blood transfusion due to blood loss during surgery. Most children require one night in the intensive care unit (ICU) before being moved to a regular hospital room. After endoscopic craniosynostosis surgery, your baby will need to wear a helmet 24 hours a day until they turn 1 year old to promote normal skull growth. 

What’s in the future for a child with craniosynostosis?

The prognosis for your child’s craniosynostosis is best when the condition is diagnosed early and treated appropriately. Some children have mild craniosynostosis that only requires helmet therapy. Most children with the condition require surgery to correct the shape of the head while allowing enough room for the brain to grow. 

How risky is craniosynostosis surgery?

Possible risks of craniosynostosis surgery include blood loss, infection, and reaction to anesthesia. However, these risks are small compared to the risks of untreated craniosynostosis. 

A Word From Verywell

Craniosynostosis usually requires surgery to correct the shape of the skull and allow enough room for the brain to grow. It is scary for parents to have to send their children into surgery. It’s helpful to remember that when craniosynostosis is diagnosed early and treated with surgery, most children go on to live healthy lives without complications. 

A serious possible complication of craniosynostosis is increased intracranial pressure. Always call your doctor right away if you are concerned that your child is showing signs of increased pressure, such as headache, shallow breathing, and vomiting.

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6 Sources
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