Coping and support
When you learn that your baby has craniosynostosis, you may experience a range of emotions, including anger, fear, worry, sorrow and guilt. You may not know what to expect, and you may worry about your ability to care for your baby. The best antidote for fear and worry is information and support.
Consider these steps to prepare yourself and to care for your baby:
- Find a team of trusted professionals. You'll need to make important decisions about your baby's care. Medical centers with craniofacial specialty teams can offer you information about the disorder, coordinate your baby's care among specialists, help you evaluate options and provide treatment.
- Seek out other families. Talking to people who are dealing with similar challenges can provide you with information and emotional support. Ask your doctor about support groups in your community. If a group isn't for you, maybe your doctor can put you in touch with a family who has dealt with craniosynostosis. Or you may be able to find group or individual support online.
- Expect a bright future. Most children have normal cognitive development and achieve good cosmetic results after surgery. Early diagnosis and treatment are key.
Oct. 18, 2016
- Cook AJ. Allscripts EPSi. Mayo Clinic, Rochester, Minn. April 14, 2016.
- Primary craniosynostosis. National Organization for Rare Diseases. http://rarediseases.org/rare-diseases/primary-craniosynostosis/. Accessed Aug. 12, 2016.
- 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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- Wetjen N (expert opinion). Mayo Clinic, Rochester, Minn. Aug. 30, 2016.