October is Spina Bifida Awareness Month

By Lydia O'Neil

Spina bifida is a neural tube birth defect that occurs in the developing embryo at such an early stage of development that the mother usually does not realize she is pregnant yet. Spina bifida happens when the spinal column does not develop correctly and the covering of the spinal cord and often the spinal cord itself protrudes into a membranous sac on the back.

Kids with spina bifida enjoy their summer at the Camp that Love BuiltChildren with spina bifida have degrees of medical problems and paralysis of the legs depending on where on the spinal column the defect is located. Shortly after birth surgery is performed to close the hole in the spinal column. Frequently a child with spina bifida will also have hydrocephalus which is the condition of having too much spinal fluid on the brain. Then it is necessary to surgically implant a shunt in the brain to relieve the pressure form the hydrocephalus.

Sometimes children with spina bifida have other problems also, such as learning disabilities, speech delays, sensory issues, urological problems, and seizures.

With the help of their parents, neurologists, neurosurgeons, physical, speech and occupational therapists, it is possible for children with spina bifida to lead happy, productive lives. As they become adults they can be successful and independently employed in occupations they enjoy. They can be married and have good friendships.

A camper and her buddy enjoy horseback ridingThese books and online resources provide additional information on spina bifida:

Books in the Library

Children with Spina Bifida: A Parents' Guide by Marlene Lutkenhoff R.N., M.S.N.
"Provides parents with information, guidance and support to help meet their child's often intensive needs from birth through childhood. In one comprehensive volume, it provides easy-to-understand compassionate coverage of the many issues of spina bifida. Written by an experienced team of parents, doctors, nurses, therapists and teachers."
1999

Giant Steps: The Story of One Boy's Struggle to Walk by Gilbert M. Gaul.
"Inspired by the quiet courage of his son Cary, two-time Pulitzer Prize winner Gilbert Gaul takes us inside his family as he recounts the struggles and joys of raising a child stricken with a severe disability."
1993

Living with Spina Bifida: A Guide for Families and Professionals by Adrian Sandler, M.D.
"For a child with spina bifida to be all that she can be in life, she, her family, her teachers, her doctors and her therapists will all be actively involved. It is in this belief that I am writing for a wide audience in this book." Adrian Sandler, M.D. 1997
Also available as an eBook.

Online Sources

KidsHealth for Parents: Spina Bifida
http://Kidshealth.org/parent/system/ill/spina_bifida.html
This page gives the types of spina bifida, basic information on diagnosis/symptoms/treatment, and suggestions for parents on how to care for their children who have this condition.

MedlinePlus
http://www.medlineplus.gov
A searchable database of information on many topics, you can search for specific learning disabilities, names of tests and treatments, and much more. This is a great place to start with to get the basics on any medical topic.

Spina Bifida Association
http://www.sbaa.org
Links to research, help and insight for daily living issues, eCommunities for parents as well as adults and teens affected by SB, and more. SBA holds an annual conference. Look under Health Professionals to find nearby clinics that specialize in SB.

Spina Bifida Information Page: National Institute of Neurological Disorders and Stroke (NINDS)
http://www.ninds.nih.gov/health_and_medical/disorders/spina_bifida.htm
Here is a spina bifida fact sheet compiled by the National Institute of Neurological Disorders and Stroke. This Web site offers addresses of organizations offering assistance to individuals with spina bifida.

Wheelchairs, Mobility, Spina Bifida
http://users.iconz.co.nz/apeacock/mobility.html
A page of information and links relating to spina bifida, hydrocephalus and wheelchairs with an emphasis on ability rather than disability.

Parent Resource Centers
These centers are affiliated with the local school systems. Found in many communities, they provide assistance for parents and students through library materials, training for parents and educators, and often have useful workshops.

City of Fredericksburg: Parent Resource Center
http://www.cityschools.com/cityschools/owg/generalinfo/
This center is located on the 2nd floor of the Original Walker-Grant School.
(540) 372-1127

Spotsylvania County: Special Services Parent Resource Centers
http://www.spotsylvania.k12.va.us/instruction/parent_resource.htm

Stafford County: Parent Resource Center
http://www.doe.virginia.gov/Div/Stafford/SpEd/parentrc.htm

The photos of SB kids enjoying summer camp are used with the permission of the Spina Bifida Association: Houston Gulf Coast. Check their Web site for more terrific photos and helpful information.