The following SBANENY toolkits were developed locally by a committee of educators, specialists, and parents.
Developed as part of the SBA National Resource Center (NRC), the following fact sheets provide in-depth information on health and interest topics related to Spina Bifida. For more information on any of these or additional topics, please contact the NRC at 800-621-3141 or us via email at firstname.lastname@example.org.
NIH/NINDS Spina Bifida Fact Sheet (Espina Bífida)
A detailed overview of Spina Bifida. Topics include: different types of Spina Bifida (occulta and myelomeningocele), treatments, prevention, and related conditions.
Spotlight on Spina Bifida (Easy-to-Read Fact Sheet – DOC)
A general overview of Spina Bifida. Topics include: different types of Spina Bifida (occulta and myelomeningocele), treatments, prevention, and related conditions. (versión en español)
Agent Orange Benefits Act
History, eligibility, application procedures, and benefits for Vietnam veterans’ children born with Spina Bifida, per the 1996 Agent Orange Benefits Act (Public Law 104-204).
Depression and Anxiety in Individuals with Spina Bifida (Easy-to-Read Fact Sheet – DOC)
Symptoms, causes, and treatment for depression and how it relates to persons with Spina Bifida. (versión en español)
Educational Issues Among Children with Spina Bifida (Easy-to-Read Fact Sheet – DOC)
Physical aspects of Spina Bifida relate to a child’s intelligence and learning ability. Children’s needs must be addressed through testing and evaluation, class placement, education services, social and emotional adjustment. (versión en español)
Folic Acid (Easy-to-Read Fact Sheet – DOC)
Many things can affect a baby, including family genetics and things women may come in contact with during pregnancy. Taking folic acid cannot guarantee having a healthy baby, but it can help reduce the risk of neural tube defects like Spina Bifida. (versión en español)
Genetics and Spina Bifida (Easy-to-Read Fact Sheet – DOC)
Genetic and environmental factors may cause a baby to be born with Spina Bifida. (versión en español)
Hip Function (PDF)
Ambulation is a Complex Issue for People with Spina Bifida
Hydrocephalus and Shunts in the Person with Spina Bifida (Easy-to-Read Fact Sheet – DOC)
Discusses information on hydrocephalus and shunts in people with Spina Bifida. (versión en español)
Learning Among Children with Spina Bifida
Describes some of the issues children with Spina Bifida have with learning, such as challenges with motor skills, attention, memory, and organization.
Lipomas and Lipomyelomeningoceles
Symptoms and treatments of spinal cord lipomas, (fatty mass or tumor within the spinal cord) and lipomyelomeningoceles (congenital lesions due to the failure of closure of spinal bones).
Medical Considerations for Therapeutic Riding with Spina Bifida
Therapeutic horseback riding can be an excellent way for people with Spina Bifida to improve fitness and strength and develop levels of independence.
People with Spina Bifida are at risk for obesity due to decreased mobility. Discusses ways to manage weight in regards to nutrition and exercise.
People with Spina Bifida are at higher risk for getting Osteoporosis.
Adults with Spina Bifida or Spina Bifida Occulta have pain.
Precocious Puberty (Easy-to-Read Fact Sheet – DOC)
Children who have Spina Bifida with hydrocephalus are more likely to begin puberty earlier than other children. Discusses possible causes of early, or “precocious puberty.” (versión en español)
Symptomatic Chiari Malformation
Chiari malformation is a deformity of the brain present at birth. It exists in the vast majority of persons with Spina Bifida, yet only a third present symptoms.
Tethering Spinal Cord
Discusses spinal cord tethering symptoms, prevention, and surgery. Twenty to fifty percent of children with Spina Bifida require surgery to untether the spinal cord.
Toilet Training the Child with Spina Bifida (Easy-to-Read Fact Sheet – DOC)
Discusses special considerations in toilet training a child with Spina Bifida. (versión en español)
Transitioning Urologic Care
Transitioning urologic care is part of the gradual shifting of responsibility from parent to child self-care. Tips on getting started and managing self-care.
Transitions into Adolescence
Tips for working with teens to ease the transitions from pediatric care to adult health care, school environment to work place and home to community living. Parents of children with Spina Bifida can help them achieve independence and self-help skills.
Travel with a Disability: Easier than Ever
Useful tips for people with Spina Bifida when traveling by air, land or sea. Also includes information on staying in a hotel.
Urologic Care and Management
Steps for persons with Spina Bifida to maintain proper urinary functioning