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Coping and support
By Mayo Clinic staffNews that your newborn child has a 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, productive and full lives — especially with encouragement and support from loved ones.
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. They may also 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.
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 and Stroke. http://www.ninds.nih.gov/disorders/spina_bifida/detail_spina_bifida.htm. Accessed June 28, 2011.
- Lightner DD. Spina Bifida. In: Ferri FF. Ferri's Clinical Advisor 2012: Instant Diagnosis and Treatment. Philadelphia, Pa.: Mosby Elsevier; 2012. http://www.mdconsult.com/books/page.do?eid=4-u1.0-B978-0-323-05611-3..00028-8--sc29020&isbn=978-0-323-05611-3&sid=1180550958&uniqId=266655520-3#4-u1.0-B978-0-323-05611-3..00028-8--sc29020
- Spina bifida. March of Dimes. http://www.marchofdimes.com/pnhec/4439_1224.asp. Accessed June 27, 2011.
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- Folic acid: Questions and Answers. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/folicacid/faqs.html. Accessed June 29, 2011.
- Spina bifida. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/spinabifida/facts.html. Accessed June 30, 2011.
- Hochberg L. Prenatal screening and diagnosis of neural tube defects. http://www.uptodate.com/home/index.html. Accessed June 30, 2011.
- Routine tests in pregnancy. American Congress of Obstetricians and Gynecologists. http://www.acog.org/publications/patient_education/bp133.cfm. Accessed June 30, 2011.
- Adzick NS, et al. A randomized trial of prenatal versus postnatal repair of myelomeningocele. New England Journal of Medicine. 2011;364:993.
- Surgery on fetus reduces complications of spina bifida. National Institutes of Health. http://www.nichd.nih.gov/news/releases/020911-MOMS.cfm?renderforprint=1. Accessed June 30, 2011.
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