In some cases, your baby's doctor may suspect craniosynostosis at a routine well-child visit due to the disappearance of your baby's soft spots or because your baby's head isn't growing as it should. In other cases, you may make an appointment because you suspect your child has craniosynostosis.
What you can do
If you have time to prepare before your baby's appointment, it's a good idea to:
- Write down any signs you've noticed, such as raised ridges or the absence of soft spots on your baby's head.
- Write down questions to ask your doctor.
Your time with your doctor may be limited, so preparing a list of questions can help you make the most of your time together. For craniosynostosis, some basic questions to ask your doctor 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?
- What are the risks involved with surgery?
- Who will perform the surgery if it's needed?
- Are there alternatives to surgery?
- 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?
- Are there brochures or other printed material that I can take with me? What websites do you recommend?
- What is the likelihood of future children having the same condition?
What to expect from your doctor
Your doctor is likely to have questions for you, as well. Being ready to answer them may reserve time to go over points you want to spend more time on. Your doctor may ask:
Sept. 30, 2013
- 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 in your pregnancy?
- Do you have a family history of craniosynostosis or of genetic conditions, such as Apert syndrome and Crouzon syndrome?
- Burokas L. Craniosynostosis: Caring for infants and their families. Critical Care Nurse. 2013;33:39.
- Craniosynostosis information page. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/craniosynostosis/craniosynostosis.htm. Accessed Aug. 1, 2013.
- Buchanan EP, et al. Overview of craniosynostosis. http://www.uptodate.com/home. Accessed Aug. 1, 2013.
- Craniosynostosis and craniofacial disorders. American Association of Neurological Surgeons. http://www.aans.org/Patient%20Information/Conditions%20and%20Treatments/Craniosynostosis%20and%20Craniofacial%20Disorders.aspx. Accessed Aug. 1, 2013.
- Cook AJ. Decision Support System. Mayo Clinic, Rochester, Minn. June 21, 2013.