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Coping and support
By Mayo Clinic staffNews that your newborn child has a devastating condition such as spina bifida can naturally cause you as a parent to feel grief, anger, frustration, fear and sadness. There's good reason to hope, however, because most people with spina bifida live active and productive lives.
Even with severe spina bifida, most children can walk for at least short distances, usually with the assistance of braces, canes or crutches, although they may require wheelchairs for longer distances. Using these devices can help a child compensate for his or her condition and gain more independence.
Many children with spina bifida have normal intelligence. But they may need early educational intervention for learning problems, and they may need extra help from teachers and counselors to adapt to school. A physical disability like spina bifida can also cause emotional and social problems. Children with spina bifida need encouragement to participate in activities with their peers and to lead independent lives, within their physical limitations and capabilities. It may be helpful to remember that these children have never known what's accepted as normal function and often adapt to their condition in remarkable ways.
Support groups
If your child has spina bifida, you may benefit from finding a support group of other parents who are dealing with the condition. Talking with others who understand the challenges — and rewards — of living with spina bifida can be helpful.
- Spina bifida fact sheet. National Institute of Neurological Disorders. http://www.ninds.nih.gov/disorders/spina_bifida/detail_spina_bifida.htm. Accessed July 30, 2009.
- Spina bifida. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merck.com/mmpe/print/sec19/ch292/ch292c.html. Accessed July 30, 2009.
- Spina bifida, March of Dimes. http://www.marchofdimes.com/pnhec/4439_1224.asp. Accessed July 30, 2009.
- Hochberg L. Prenatal screening and diagnosis of neural tube defects. http://www.uptodate.com/index/home.html. Accessed July 30, 2009.
- Ask the doctor archive. Spina Bifida Association. http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2738091/k.9A71/Risk_Factor.htm. Accessed Aug. 1, 2009.
- Cameron M, et al. Prenatal screening and diagnosis of neural tube defects. Prenatal Diagnosis. 2009;29:402.
- Routine tests in pregnancy. American College of Obstetricians and Gynecologists. http://www.acog.org/publications/patient_education/bp133.cfm. Accessed Aug. 1, 2009.
- FAQs about folic acid. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/folicacid/faqs.html. Accessed July 30, 2009.
- Edwards MJ. Hyperthermia and fever during pregnancy. Birth Defects Research (Part A): Clinical and Molecular Teratology. 2006;76:507.
- Folic acid for the prevention of neural tube defects: U.S. Preventive Services Task Force recommendation statement. Rockville, Md.: U.S. Preventive Services Task Force. http://www.annals.org/cgi/reprint/150/9/626.pdf. Accessed Aug. 24, 2009.
- Harms RW (expert opinion). Mayo Clinic, Rochester, Minn. Aug. 24, 2009.
