Spina bifida is what is known as a neural tube defect. It occurs during development prior to birth. It’s when the spinal cord, brain, or meninges (their protective covering) does not completely develop. It can be anywhere along the spine and usually can be seen in an opening in the baby’s back at birth. It may also appear as a sack of fluid that has grown outside the body on the spine. This sack may or may not include the spinal cord inside.
There are three types of spina bifida: myelomeningocele, meningocele, and spina bifida occulta.
Myelomeningocele
This is the most common and serious type of spina bifida. It involves a sack outside the opening in the baby’s back somewhere on the spine. This sack contains parts of the spinal cord and nerves. The spinal cord and nerves in the sack will be damaged.
People with myelomeningocele have physical disabilities that range from moderate to severe. These disabilities may include:
- incontinence
- difficulty going to the bathroom
- inability to move or feel their legs or feet
Meningocele
This type of spina bifida also involves a sack of fluid outside an opening in the baby’s back. However, the sack does not contain any part of the spinal cord. Because there isn’t a lot of nerve damage, meningocele causes only minor disabilities.
Spina bifida occulta
This is a mild type of spina bifida. It may also go by the term “hidden” spina bifida. It does not cause any disabilities and may go unnoticed until later in life. There is usually no opening in the baby’s back, but only a gap in the spine. In this type, there is no damage to the spinal cord or the nerves.
The symptoms of spina bifida are different for each type. They can also vary from person to person within each type.
Myelomeningocele
Symptoms of myelomeningocele spina bifida include:
- open spinal canal over some vertebrae, usually in the middle or lower part of the back
- membranes and spinal cord pushed outside the back in an exposed or skin-covered sack
- weak or paralyzed leg muscles
- seizures
- deformed feet
- hips that are not even
- scoliosis (curved spine)
- issues with the bowel and bladder
Meningocele
Symptoms of meningocele type of spina bifida include:
- small opening in the back
- sack that’s visible at birth
- membranes pushing out through the opening in the vertebrae into sack
- normal development of the spinal cord
Membranes can be surgically removed in cases of meningocele.
Spina bifida occulta
Symptoms of spina bifida occulta include:
- a gap in between vertebrae
- no visible opening outside
- no fluid-filled sack outside the body
- small birthmark or dimple on the back
- small group or cluster of hair on the back
- an area of extra fat on the back
A person may not ever know they have this type of spina bifida.
All of the exact causes of spina bifida are not specifically understood. However, it involves a combination of genetics and environmental factors. A child born with spina bifida may not have any relatives with the condition, even though genetics play a factor. It’s also believed that a lack of folic acid, also known as vitamin B-9, plays a role in spina bifida.
Other factors that are believed to play a role include:
Spina bifida is not curable, so it will need to be managed your entire life.
In children
For children, treatment focuses on determining the extent of symptoms and disabilities as they develop and preventing those that can be prevented. Proper rehabilitation and medical interventions will be determined and used throughout the child’s development. Childhood is also the time for parents and medical staff to instill a positive attitude toward treatment and management to help the child develop a positive outlook.
In adults
By adulthood, the majority of symptoms and disabilities are known. Coping mechanisms, medications, therapies, and any walking aids are normally in place. Many children with spina bifida grow up to attend college and have careers. Some also live independently.
However, ongoing medical issues can develop throughout the life of a person with spina bifida. Further, some people with more severe disabilities may struggle socially due to stigma and have difficulty finding careers that will fit with their disabilities. However, a good support network can help ease the negative effects.
The treatment for spina bifida will be different for each person because symptoms and severity can vary. In some cases, especially in spina bifida occulta, there may not be any treatment needed.
However, myelomeningocele and meningocele require surgery to put the exposed sack and nerves back in place. Some of it may also require removal. The surgeon will then close the opening over the vertebrae. There may be a shunt put in place to avoid complications later in life. This surgery may be performed shortly after the child’s birth. In some cases, prenatal surgery may be done while the baby is still in the womb. You should talk to your doctor about the benefits and risks of both types of surgery.
Even after surgery is performed, some symptoms and disability can remain. They will need to be managed based on the severity of each symptom. Paralysis and bowel and bladder issues typically remain throughout life. Treatment for remaining symptoms can include:
- additional surgeries
- medications
- physical therapy
- rehabilitation services
- walking aids
Spina bifida occurs very early in pregnancy. Most women don’t even know they’re pregnant by the time it occurs. So if you’re trying to become pregnant, you should start taking preventive measures against spina bifida. Follow these preventive steps:
- Take a folic acid supplement as prescribed by your doctor.
- Include leafy green vegetables, nuts, beans, and other foods that contain folic acid in your diet.
- Discuss any medications or supplements you take with your doctor.
- If you have diabetes, make sure it’s under control prior to pregnancy.
- If you’re overweight, you should talk to your doctor about a healthy diet and exercise plan.
- Keep your body from overheating from saunas, hot tubs, or a fever.
With proper treatment and management of spina bifida, even people with severe forms can live productive lives. If you have spina bifida, it’s important to stay in contact with your team of medical professionals to track any changes or other medical conditions that may arise throughout your life. They will help you continue to manage your spina bifida effectively.