OVERVIEW AND FACTS
Spina Bifida is broader term for a birth defect in which the backbone and spinal canal do not close before birth. Spina bifida includes any birth defect involving insufficient closure of the spine.
Spina bifida occulta is a condition in which the bones of the spine do not close but the spinal cord and meninges remain in place and skin usually covers the defect.
Meningoceles is a condition where the tissue covering the spinal cord sticks out of the spinal defect but the spinal cord remains in place.
A myelomeningocele is a congenital (present at birth) deformity and the most serious form of spina bifida. It can occur anywhere along the spinal cord. With myelomeningocele, the spinal canal is open.
SYMPTOMS AND TYPES
The cause of spina bifida is unknown. However, folic acid deficiency is thought to play a part in neural tube defects. It is recommended that any woman considering becoming pregnant take 0.4 mg of folic acid a day. Pregnant women need 1 mg per day.
Also, if a child is born with spina bifida, subsequent children in that family have a higher risk than the general population.
Some theorize that a virus make play a role, since there is a higher rate of this condition in children born in the early winter months. Research also indicates possible environmental factors such as radiation.
A newborn may have a sac sticking out of the mid to lower back. The doctor cannot see through the sac when shining a light behind it. Symptoms include:
- Loss of bladder or bowel control
- Partial or complete lack of sensation
- Partial or complete paralysis of the legs
- Weakness of the hips, legs, or feet of a newborn
The exposed spinal cord is susceptible to infection. Other symptoms may include:
- Hair at the back part of the pelvis called the sacral area
- Dimpling of the sacral area
TREATMENT AND CARE
After birth, surgery to repair the defect is usually recommended at an early age. Before surgery, the infant must be handled carefully to reduce damage to the exposed spinal cord. This may include special care and positioning, protective devices, and changes in the methods of handling, feeding, and bathing.
Antibiotics may be used to treat or prevent infections such as meningitis or urinary tract infections.
Gentle downward pressure over the bladder may help drain the bladder. In severe cases, drainage tubes, called catheters, may be needed. Bowel training programs and a high fiber diet may improve bowel function.
Orthopedic or physical therapy may be needed to treat musculoskeletal symptoms. Neurological losses are treated according to the type and severity of function loss.
Follow-up neurologic testing as the child gets older helps to guide rehabilitation.
Frequent doctor’s visits will be needed early on if your baby has severe spina bifida. Doctors use these visits to make sure that treatments are working and to determine whether the child needs more surgery.
A baby with severe spina bifida may need ongoing physical therapy to help strengthen the muscles by exercising the arms and legs. You will be able to help your baby do many of these exercises at home.
Living your Life with Spina Bifida-
Spina Bifida is not one condition; it is a multitude of problems that affect the mind, the body, and the spirit. No two cases of Spina Bifida are ever the same. SBA offers support and essential information to those 70,000 Americans who live with Spina Bifida and their families.
Some of the challenges that potentially face those with Spina Bifida are:
- Latex Allergy
- Hydrocephalus and Shunts in the Person with Spina Bifida
- Depression and Anxiety in Individuals with Spina Bifida
- Urologic Care and Management
- Obesity Among Persons with Spina Bifida
ASSISTANCE AND COMFORT
Thanks to new medical treatments and technology, many people born with Spina Bifida can now expect to live into adulthood. However, they potentially face several different challenges that are unique to people with Spina Bifida. There are many resources available that can be helpful in managing these challenges. Some of these include:
- Employment assistance
- Government assistance
- Spina Bifida clinics
- Support groups
- Accessible housing resources
- Information about sexuality
SBA has also produced a comprehensive health guide for adults with Spina Bifida. Available either in print or on CD, the Health Guide for Adults Living with Spina Bifida is available through the National Resource Center. It covers a wide range of topics related to adult health issues from learning and sexuality to bowel and bladder management.
For more information on this question and other related topics, SBA offers a series of fact sheets and publications. Additional questions or requests for information should be sent to the SBA National Resource Center.
FREQUENTLY ASKED QUESTIONS
The SBA National Resource Center has gathered the most frequently asked questions about Spina Bifida to allow easy access to important information.
If the answer to your question is not here, please contact the National Resource Center. The National Resource Center on Spina Bifida is the only clearinghouse of information exclusively dedicated to Spina Bifida – from finding the closest SBA Chapter for support to locating a Spina Bifida Clinic in your area. It draws from a breadth of resources and publications to help find the information you are searching for.
General Information:
Are there different types of Spina Bifida?
How often does Spina Bifida occur?
What are the costs associated with Spina Bifida?
How many people with Spina Bifida are there in the United States?
Does the Spina Bifida Association provide financial aid?Risk of Spina Bifida:
Who is at risk for Spina Bifida?
Are certain ethnic groups more likely to have Spina Bifida?
What can be done to reduce the risk?
I’m pregnant and the baby has Spina Bifida. Do you have any information on Spina Bifida and fetal surgery?Spina Bifida Rates:
How often does Spina Bifida occur?
How often does Spina Bifida occur in my state? How does this compare to the national average?
Are there certain regions of the country where the rates of Spina Bifida are higher?Living with Spina Bifida:
Where are accessible summer camps?
I’m an adult with Spina Bifida. What’s out there to help me?
How can I help my child achieve urinary continence and bowel control?
What’s the Agent Orange Benefits Act and what does it cover?
What are the symptoms of shunt malfunction in hydrocephalus?
Are there any learning disabilities associated with Spina Bifida?