What should I expect before craniosynostosis surgery?

What should I expect during a consultation for craniosynostosis surgery?

During your craniosynostosis surgery consultation be prepared to discuss:

• Your child's growth and development
• Any changes you have noticed to your child's head shape or eye position
• Any other medical problems your child has
• Previous surgeries or hospitalizations

Your plastic surgeon will also:

• Evaluate your child's head shape
• Take photographs
• Discuss your craniosynostosis surgery options
• Recommend a course of treatment
• Discuss likely outcomes of craniosynostosis surgery and any potential risks
• Discuss the planned hospital stay, including potential blood transfusions and intensive care unit (ICU) stay

The consultation is the time to ask your plastic surgeon questions. To help, we have prepared a checklist of questions to ask your plastic surgeon that you can take with you to your craniosynostosis surgery consultation. Craniosynostosis is a complicated problem and may raise many questions or concerns for you. Don't hesitate to discuss these concerns with your plastic surgeon.

What questions should I ask my plastic surgeon about craniosynostosis surgery?

Use this checklist of as a guide during your craniosynostosis surgery consultation:

• Are you certified by the American Board of Plastic Surgery?
• Have you completed additional fellowship training in craniofacial surgery?
• How many years of plastic surgery training have you had?
• Do you perform the surgery at a specialized children's hospital with pediatric anesthesiologists?
• Are you part of a multidisciplinary craniofacial team?
• What sutures of my child's skull are fused?
• Does my child have any signs of a genetic syndrome related to craniosynostosis?
• Does my child have any signs of raised intracranial pressure (ICP)?
• What surgical technique for craniosynostosis is recommended for my child?
• What age should the surgery be performed at?
• How long of a recovery period can I expect, and what kind of help will my child need during recovery?
• What are the risks and complications associated with my child's procedure?
• How are these complications handled?
• Will surgery require a blood transfusion?
• How long will my child be in the hospital after surgery?
• Will there be a stay in the intensive care unit (ICU)?
• How will my child's head shape change after the operation?
• Will my child need a helmet for any time after surgery? How many hours per day is the helmet worn?
• Do you have before-and-after photos I can look at for this procedure?

What are the risks of craniosynostosis surgery?

Your child cannot choose whether or not to have surgery. As a parent, you will have to weigh the potential benefits of improved head shape and increased space for your child's growing brain and with the risks and potential complications of craniosynostosis surgery. Only you can make that decision for your child.

You will be asked to sign consent forms to ensure that you fully understand the procedure and any risks and potential complications.

Possible craniosynostosis surgery risks include:

• Anesthesia risks
• Bleeding
• Changes in skin sensation of the scalp
• Extremely rare risks of blindness or death
• Incomplete correction of abnormal head shape or eye position
• Infection
• Injury to the coverings of the brain (dura) or the large veins of the brain (dural sinuses)
• Leakage of cerebrospinal fluid (CSF)
• Pain or numbness of the scalp, which may persist
• Persistent gaps in the skull bones
• Possible need for revision surgery
• Recurrence of raised intracranial pressure (ICP)
• Risks related to blood transfusion
• Swelling and bruising, including the eyes swelling shut temporarily
• Unfavorable scarring or a scar which is not well covered by hair growth

These risks and others will be fully discussed prior to your consent. It is important that you address all your questions directly with your plastic surgeon and neurosurgeon.

How should I prepare my child for craniosynostosis surgery?

In preparing for craniosynostosis surgery, your child may be asked to:

• Get lab testing and a crossmatch for blood to be transfused
• Have imaging studies such as a CT scan
• Meet with a multidisciplinary team of several medical specialists who will help to coordinate all of your child's care

Surgery for craniosynostosis should be performed by a team of a plastic surgeon and a pediatric neurosurgeon who are experienced in the care of craniosynostosis. These surgeries should be performed with the support of a pediatric anesthesiologist at a center that performs this type of surgery regularly.