In some cases, your baby's pediatrician may suspect craniosynostosis at a routine well-baby visit. In other cases, you may make an appointment because you have concerns about your baby's head growth. Your doctor can refer you to a specialist for diagnosis and treatment.
Here's some information to help you get ready for your appointment. If possible, bring a family member or friend with you. A trusted companion can help you remember information and provide emotional support.
What you can do
Before the appointment, make a list of:
- Any signs you've noticed, such as raised ridges or the absence of soft spots on your baby's head
- Questions to ask your doctor
Questions to ask might include:
- What's the most likely cause of my baby's symptoms?
- Are there other possible causes?
- What kinds of tests does my baby need? Do these tests require any special preparation?
- Is this condition temporary or long lasting?
- What treatments are available, and which do you recommend?
- Are there alternatives to the treatment you're recommending?
- What are the risks involved with surgery?
- Who will perform the surgery if it's needed?
- What happens if we choose not to have the surgery right now?
- Will the abnormal shape of the skull affect the functioning of my baby's brain?
- What is the likelihood of future children having the same condition?
- Are there brochures or other printed material that I can have?
- What websites do you recommend?
Don't hesitate to ask other questions during the appointment.
What to expect from your doctor
Your doctor is likely to ask you questions, as well. Be ready to answer them to reserve time to go over points you want to spend more time on. Your doctor may ask:
- When did you first notice the changes in your baby's head?
- How much time does your baby spend on his or her back?
- In what position does your baby sleep?
- Has your baby had any seizures?
- Is your baby's development on schedule?
- Were there any complications during your pregnancy?
- Do you have a family history of craniosynostosis or genetic conditions such as Apert syndrome, Pfeiffer syndrome or Crouzon syndrome?
Aug. 04, 2017
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- NINDS craniosynostosis information page. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/craniosynostosis/craniosynostosis.htm. Accessed Aug. 12, 2016.
- Facts about craniosynostosis. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/birthdefects/craniosynostosis.html. Accessed Aug. 12, 2016.
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- Mardini S, et al. Three-dimensional preoperative virtual planning and template use for surgical correction of craniosynostosis. Journal of Plastic, Reconstructive and Aesthetic Surgery. 2014;67:336.
- Wetjen N (expert opinion). Mayo Clinic, Rochester, Minn. Aug. 30, 2016.