What is spina bifida?
Spina bifida is a birth defect. Most children who have spina bifida do not have problems from it. It occurs when the bones of the spine (vertebrae) do not form properly around part of the baby’s spinal cord. It can affect how the skin on the back looks. And in severe cases, it can make walking or daily activities hard to do without help.
The disease can be mild or severe.
- The mild form is the more common form. It usually does not cause problems or need treatment. You can't see the defect. So most people don't know they have it until they get a back X-ray for another reason.
- The severe forms are less common. There are two types:
- Meningocele (say "muh-NIN-juh-seel"). Fluid leaks out of the spine and pushes against the skin. You may see a bulge in the skin. In many cases, there are no other symptoms.
- Myelomeningocele (say "my-uh-loh-muh-NIN-juh-seel"). Although this is the most rare and severe form of spina bifida, it is the form most people mean when they say "spina bifida." Part of the spinal nerves push out of the spinal canal, and you may see a bulge in the skin. The nerves are often damaged, which can cause problems with walking, bladder or bowel control, and coordination. In some babies, the skin is open and the nerves are exposed.
What causes spina bifida?
The exact cause of this birth defect is not known. Experts think that genes and the environment are part of the cause. For example, women who have had one child with spina bifida are more likely to have another child with the disease. Women who are obese or who have diabetes are also more likely to have a child with spina bifida.
What are the symptoms?
Your child’s symptoms will depend on how severe the defect is. With a mild defect, your child may have no symptoms or problems. Or your child might have a dimple, a birthmark, or a hairy patch on his or her back.
In severe cases, you may see nerves coming out of your child’s back or swelling on the spine. A child with a severe defect may have nerve damage that affects daily living. The child may have little or no feeling in the legs, feet, or arms. And he or she may not be able to move those parts of the body.
Children with a severe defect are sometimes born with fluid buildup in the brain ( hydrocephalus ). They may also have this problem after birth. It can cause seizures, intellectual disability, or sight problems. Some children also get a curve in the spine, such as scoliosis .
Many children who have severe spina bifida develop an allergy to latex (a type of rubber).
How is spina bifida diagnosed?
If test results suggest a birth defect, she can choose to have an amniocentesis . This test helps confirm if spina bifida exists. But the test also has risks, such as a chance of miscarriage.
How is it treated?
Treatment depends on how severe the defect is. Most children with spina bifida have only a mild defect and may not need treatment. But a child with a severe defect may need surgery. If your child has problems from nerve damage, he or she may need a brace or a wheelchair, physical therapy, or other aids.
There are things you can do to support your child:
- Help your child be active and eat healthy foods.
- Go to all scheduled doctor visits.
- Talk to your doctor about early treatment. Most children who have spina bifida and their parents work with people such as physical therapists or occupational therapists starting soon after the baby is born. Therapists can teach parents and caregivers how to do exercises and activities with the child.
- Keep your child away from latex products if he or she has a latex allergy.
- If your child has bladder control problems, help him or her use a catheter each day. It can help prevent infection and kidney damage in your child.
- If your child has little or no feeling in the limbs and can't sense pain, he or she may get injured and not know it. You may need to check your child’s skin each day for cuts, bruises, or other sores.
- When your child is ready to go to school, talk with teachers and other school workers. Public schools have programs for people ages 3 through 21 with special needs.
- Take good care of yourself so you have the energy to enjoy your child and attend to his or her needs.
- Ask for help from support groups, family, and friends when you need it.
How can you prevent spina bifida?
Before and during pregnancy, a woman can help prevent spina bifida in her child.
- Get plenty of folic acid each day. Eat foods rich in folic acid , such as fortified breakfast cereals and breads, spinach, and oranges. Your doctor may recommend that you also take a daily vitamin with folic acid or a folic acid supplement.
- If you take medicine for seizures or acne, talk with your doctor before you get pregnant. Some of these medicines can cause birth defects.
- Don't drink alcohol while you are pregnant. Any amount of alcohol may affect your baby’s health.
- Don't let your body get too hot in the first weeks of pregnancy. For example, don't use a sauna or take a very hot bath. And treat high fevers right away. The heat could raise your baby’s risk for spina bifida
All foods made from grains and sold in the United States have folic acid added. It helps prevent children from being born with spina bifida.
Learning about spina bifida:
Living with spina bifida:
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There are no symptoms that indicate a pregnant woman has a fetus with spina bifida .
The appearance and symptoms of a child who is born with spina bifida depend on how severe the condition is.
- If the spina bifida is mild, there may be no physical sign of the condition. In some cases a birthmark, dimple, or hairy patch may form over the defect. There are rarely any other signs.
- In severe cases, there usually is a fluid-filled swelling on the baby's spine. In the most severe cases ( myelomeningocele ), tissues and nerves from the spinal cord are exposed on the child's back.
Children with severe spina bifida often have parts of the brain and upper spinal cord that are not formed normally. It is also common for these children to have fluid on the brain ( hydrocephalus ). Related problems can cause:
- Trouble swallowing, which can lead to choking.
- Breath-holding and problems breathing during sleep.
- Learning disability.
- Seizure disorders .
- Strabismus (sometimes called crossed-eyes), a vision problem in which the eyes do not both look in the same direction at the same time.
If hydrocephalus is not treated, it can cause severe intellectual disability or death.
The most severe form of spina bifida (myelomeningocele) almost always affects the function of the limbs and organs in the lower part of the body. The child's ability to walk depends on what part of the spine is affected and how severe the spina bifida is. The lower (lumbar) spine is affected in most cases. The higher on the spine the defect occurs, the more severe and widespread are the problems. See a picture of the spine .
- If the defect is in the lower spine, the child usually is able to walk but may require ankle-foot braces and surgery to correct foot deformities.
- If the defect is in the middle of the spine, the child will need leg braces or crutches to walk and will need a variety of corrective surgeries. A wheelchair may be needed when long periods of mobility are required (for example, when shopping). Some people may use a wheelchair at all times.
- In rare cases when the defect is higher in the spine, it can also affect function in the arms and upper body.
Spinal cord damage caused by severe spina bifida may cause problems such as:
- Inability to control urine or bowel movements (incontinence).
- Little or no feeling in the legs and feet.
- Inability to move or feel (paralysis) the legs and, less often, the arms.
Most children who have severe spina bifida have curvature of the spine— scoliosis , kyphosis (hunchback), or both. It can be present at birth or develop later in life.
Many children who have severe spina bifida develop an allergy to latex, a natural rubber product that is used to make objects such as toys and health care supplies. Doctors do not know why many children with spina bifida develop this allergy. Take extra care to keep your child who has spina bifida away from products that contain latex.
Exams and Tests
Tests for spina bifida done before birth
During your second trimester, you can have a blood test called the maternal serum triple or quadruple screen to see whether you have a higher-than-normal chance of having a baby with birth defects. This test is used to screen a fetus for certain abnormalities, including neural tube defects . The most common type of neural tube defect is spina bifida. The triple or quadruple screen test does not pose any risk to the fetus.
If the triple or quadruple screen test shows that you have elevated levels of alpha-fetoprotein (AFP), a neural tube defect in the fetus, such as spina bifida, may be suspected. In this case, the following tests usually are done:
- High-resolution fetal ultrasound . This test can help a doctor identify severe cases of spina bifida in a fetus, such as myelomeningocele , in which tissues and nerves are exposed and protrude from the spinal cord. Fetal ultrasound does not always detect abnormalities related to spina bifida, especially in mild cases.
- Amniocentesis. This test usually is done to confirm elevated AFP levels identified by the triple screen test. It also is used to measure levels of acetylcholinesterase (ACH), an enzyme that is found in fetuses that have neural tube defects. You may have amniocentesis without first having an ultrasound or even when an ultrasound appears normal.
Severe spina bifida is strongly suspected when amniocentesis shows high levels of AFP and ACH and when fetal ultrasound results show severe spinal abnormalities.
An early diagnosis of severe spina bifida allows you to make an informed decision about your pregnancy. If you decide to carry the fetus to term, knowing about the defect can help you and your family prepare for your baby's special needs.
Testing for spina bifida after birth
Children who have mild spina bifida may have no physical symptoms. It is often not found until later in life, when the person has a back X-ray for other reasons. It usually does not cause any problems.
Severe spina bifida is usually obvious at birth, because the baby has a noticeable swelling on the back. Many babies with severe spina bifida, especially those with myelomeningocele, have enlarged heads caused by an excess of spinal fluid in the head ( hydrocephalus ).
After birth, tests to evaluate the extent of the spinal defect may include:
- MRI, which gives a detailed picture of the brain, spinal cord, and related nerves.
- CT scan, in which an X-ray machine rotates around the body to produce a three-dimensional view. This allows a doctor to see deformities or swelling in the brain and spinal cord.
Babies with severe spina bifida often have problems related to nerve damage of the spinal cord. This nearly always affects the urinary system . Evaluation to determine the extent of this damage may include a renal ultrasound and cystourethrogram.
Nerve damage may also affect the limbs, especially the legs. During your child's physical exams, the doctor will look for limb deformities, such as clubfoot . The doctor will also observe your child's arm and leg movements.
Treatment usually is not needed for the mild form of spina bifida and often not needed for meningocele. Treatment of the most severe form of spina bifida ( myelomeningocele ) depends on the specific problems caused by the spinal defect and may include surgery, physical therapy , and the use of braces and other aids. Some children will have problems day to day, and others won't.
Most babies born with severe spina bifida live through childhood or longer.
A team of health professionals can help you address your child's needs. The team may include primary care doctors, nurses, surgeons, and therapists.
Sometimes severe spina bifida can be surgically corrected before a baby is born (prenatally). The pregnant woman's uterus is entered with surgical instruments and the fetus's spine is repaired. This surgery, which is only done in specialized medical centers, is relatively new. And it is not yet known how much benefit this surgery provides in the long term. Early results suggest that this surgery may decrease the risk that the baby will need a drainage tube called a shunt to relieve pressure on the brain. The surgery may also improve the baby's ability to be active as he or she grows up. But it also poses considerable risk for the fetus and mother and can cause premature birth. And if you want to have another baby, it will have to be delivered by cesarean section . 1 Talk with your doctor about the advantages and risks of this surgery.
If you know that you are carrying a baby who has severe spina bifida, talk with your doctor about whether to have a cesarean section (C-section) or not. Try to have your baby in a large medical center where neonatal (new baby) surgery can be done.
For the most severe form of spina bifida, initial treatment includes surgery on the exposed nerves and tissues. Some babies who have meningocele will also need surgery. Surgery is done to prevent spinal cord infection and protect the exposed nerve tissues from injury. It is usually performed within a few days after birth. Depending on the baby's health, surgery may be delayed for up to 6 weeks. Antibiotics are often given to prevent infection from developing inside the spinal cord or brain ( encephalitis or meningitis ).
Most babies with severe spina bifida have increased fluid around the brain ( hydrocephalus ). Treatment for hydrocephalus involves surgically installing a drainage tube called a shunt that relieves pressure on the brain by draining excess fluid into the abdomen. This keeps the swelling from causing further damage to the brain. A shunt may be necessary for the rest of the child's life.
Some babies also have a condition called a Chiari malformation of the brain. In a Chiari malformation, the lower part of the brain presses on the bones of the lower part of the skull and the upper spine. Pressure on the brain can sometimes be relieved with surgery to remove some of the bone.
In the first few weeks of life, a baby with severe spina bifida may need physical therapy or occupational therapy. The therapist will move the arms and legs to help the muscles and joints stay flexible. The therapist will also teach the parents how to do these exercises. The parents will then continue to help their baby do the exercises at home.
Nerve damage from spina bifida can lead to foot deformities, such as clubfoot , and hip deformities. Treatment of clubfoot may involve using a cast for the first few months of life, and then surgery may be done. Hip deformities may also be corrected surgically. But doctors recommend surgery only if it is likely to allow the child to walk.
Leg braces may be needed when the child is old enough to walk. These help prevent damage to the joints and help the child walk.
Curvature of the spine— scoliosis , kyphosis (hunchback), or both—may be treated with a brace. But if curvature gets worse as the child grows, it may need to be corrected surgically.
Bladder problems resulting from nerve damage can prevent complete emptying of the bladder, which can lead to kidney damage. If your child has bladder problems, you'll likely be taught how to insert a urinary catheter several times a day to ensure your child's bladder gets completely emptied. This is called clean intermittent catheterization, or CIC. Your child can insert the catheter when he or she is old enough.
Bowel problems are common in children who have severe spina bifida. Nerve damage can keep the muscles of the digestive tract from squeezing properly to move contents through the intestines and can also keep the muscle around the anus from closing tightly. Also, there may not be normal feeling (sensation) to let the child know when he or she needs to go to the bathroom or when he or she has had a bowel movement. Parents usually begin working with the doctor or nurse on managing bowel care as soon as the child starts eating solid food.
Some children have problems if scar tissue attaches the spinal cord to other tissues. The scar tissue holds the lower end of the spinal cord in place so the cord stretches as the child grows. This is called a tethered spinal cord. It can cause or increase problems with movement, bladder and bowel control, and pain. Some children will have repeat surgery to release the scar tissue and free the end of the spinal cord.
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 see if the child needs more surgery.
A baby with severe spina bifida may need ongoing physical therapy to keep joints and muscles flexible and 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.
Complications linked with spina bifida include:
- Skin infections if sensation to injury is diminished. Prevent infections by daily examining your child's skin.
- Urinary tract infections (UTIs) because it is hard to empty the bladder. Clean intermittent catheterization (CIC) may be needed to keep the bladder emptied. In some cases, the doctor will suggest surgery to help treat or prevent urinary tract or kidney problems. Your child's doctor may also prescribe antibiotics to help prevent UTIs or medicines to help with bladder control.
- Constipation because of nerve injury affecting the bowel. Be certain your child drinks enough water. Your doctor may recommend that your child also take stool softeners.
- Latex allergy, which is common in children who have spina bifida. Latex is a natural rubber product that is used to make objects such as toys and health care supplies. Do not allow your child to come into contact with items that contain latex.
- Problems with the shunt that may be used to drain excess fluid from the head.
Treatment if the condition gets worse
Other problems can occur with severe spina bifida and may get worse as the child grows:
- Severe curvature of the spine—scoliosis or kyphosis (hunchback)—may need to be corrected with surgery.
- Depending on the location of the nerve damage, walking may become increasingly difficult, and the child may eventually require a wheelchair for mobility.
Sometimes spina bifida causes people to have an abnormal walking pattern (gait). It can lead to arthritis of the hips or knees, and treatment may be needed. For more information, see the topic Osteoarthritis.
How to support your child who has severe spina bifida
Exercise promotes strength, physical development, and enhanced mobility in children with spina bifida. Even children who use a wheelchair full time benefit from exercise. Exercise helps prevent brittle bones, strengthens muscles, and reduces the risk of joint injury.
Your health care team will provide you with exercises to do with your baby. To promote activity, you can also:
- Place your child on his or her stomach and place toys within reach to encourage the use of arms.
- Move your child's joints through their full range of motion as instructed by your doctor or physical therapist . This helps increase flexibility and prevent injury to the joints.
- Encourage your child to take responsibility for household chores as he or she grows older.
Work on ways to strengthen your child's self-esteem . Help your child learn about and nurture his or her unique talents. For more information, see:
Preventing skin infections and injuries requires daily inspection of your child's skin. Children with spina bifida who have little or no feeling in their legs and feet are not able to sense pain and may injure themselves without knowing it. Some injuries may result in infections. Look for cuts that your child has not noticed, blisters and pressure sores that result from staying in one position too long, raw places where braces rub on the skin, and other signs of injury. Early care of any blisters, sores, or cuts helps prevent infection.
Take care of your child's bladder control problems to help prevent bladder infections and kidney damage. Your doctor may suggest clean intermittent catheterization (CIC). You or your child will be taught to insert a catheter into his or her bladder at least 4 times a day. CIC lets urine flow out of the urethra .
Help your child prevent constipation by paying close attention to his or her diet. If your child has nerve damage that contributes to constipation, encourage him or her to drink plenty of fluids and eat foods that are high in fiber , such as whole grains and fruits. Some children need enemas , stool softeners, or laxatives to help them pass stool.
Children with spina bifida often have an allergy to latex. Help your child avoid contact with latex products, such as certain toys, balloons, and gloves. The Spina Bifida Association of America (www.sbaa.org) maintains a list of items that contain latex.
Educational needs of the child who has spina bifida
When your child reaches school age, you may need to help teachers understand your child's special needs. For example, your child may have problems with coordination that make writing difficult. Some children with severe spina bifida will have learning problems . You can work with teachers and other school officials to create a plan to take care of your child's special needs. Sometimes this is as simple as giving the child extra time to complete school work.
In the United States, laws guarantee free early treatment programs and equal access to public education for all disabled children. These laws protect a parent's right to be fully informed about educational decisions concerning his or her child. Also, the laws protect the parent's rights when he or she disagrees with any decision. Contact your state and local education departments for information about your rights to educational accommodations.
Prevention of spina bifida
To help reduce the risk of having a child who has spina bifida and other neural tube defects , you need to get plenty of folic acid. Women who are at risk (such as those who have already had a child with spina bifida) should take 4,000 mcg of folic acid a day. 2 Having enough folic acid in your diet is an important part of preventing spina bifida. To be effective, it needs to be consumed before a baby is conceived. Folic acid may be obtained from vitamin supplements and by eating foods that are rich in folic acid, such as fortified breakfast cereals and breads, spinach, and oranges. Since 1998, the United States government has required that foods made from grains and sold in the U.S. be supplemented with folic acid to help reduce the risk of spina bifida.
Before you become pregnant, talk with your doctor about the risk for having a baby with spina bifida. This is especially important if you are taking medicines for epilepsy , such as valproic acid (Depakene or Depakote) or medicines for acne , such as isotretinoin (such as Amnesteem, Claravis, or Sotret). These medicines are linked with a higher rate of neural tube defects and should not be taken just before and during the first 3 months of pregnancy.
Because no amount of alcohol is considered safe during pregnancy, do not drink while you are pregnant. Women who drink large amounts of alcohol during their pregnancy have an increased risk for having a child with physical and mental effects caused by alcohol exposure .
High body temperature (hyperthermia) can cause spina bifida to develop in your fetus. So avoid exposure to excessive heat, such as saunas or soaking in a very hot bath, during the first weeks of your pregnancy. A high fever during the first weeks of pregnancy can also cause hyperthermia.
Other Places To Get Help
|233 South Wacker Drive|
|Chicago, IL 60606|
Easter Seals provides information and services to help people with disabilities. Its programs include counseling, training, social clubs, camping, transportation, and referrals. Call for information on the nearest chapter or to receive a catalog of their publications and products.
|National Institute of Neurological Disorders and Stroke|
|NIH Neurological Institute|
|P.O. Box 5801|
|Bethesda, MD 20824|
The National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health, is the leading U.S. federal government agency supporting research on brain and nervous system disorders. It provides the public with educational materials and information about these disorders.
|KidsHealth for Parents, Children, and Teens|
|10140 Centurion Parkway|
|Jacksonville, FL 32256|
This website is sponsored by the Nemours Foundation. It has a wide range of information about children's health, from allergies and diseases to normal growth and development (birth to adolescence). This website offers separate areas for kids, teens, and parents, each providing age-appropriate information that the child or parent can understand. You can sign up to get weekly emails about your area of interest.
|March of Dimes|
|1275 Mamaroneck Avenue|
|White Plains, NY 10605|
The March of Dimes tries to improve the health of babies by preventing birth defects, premature birth, and early death. March of Dimes supports research, community services, education, and advocacy to save babies' lives. The organization's website has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care.
|Spina Bifida Association|
|4590 MacArthur Boulevard NW|
|Washington, DC 20007|
The Spina Bifida Association of America is a voluntary health agency that provides information about spina bifida to parents and health professionals to promote public awareness, advocacy, and research. This organization produces written and audiovisual materials, including a newsletter and brochures covering topics such as latex allergy and folic acid.
- Adzick NS, et al. (2011). A randomized trial of prenatal versus postnatal repair of myelomeningocele. New England Journal of Medicine. Published online February 9, 2011 (doi:10.1056/NEJMoa1014379).
- American College of Obstetricians and Gynecologists (2003, reaffirmed 2011). Neural tube defects. ACOG Practice Bulletin No. 44. Obstetrics and Gynecology, 102(1): 203–210.
Other Works Consulted
- Ghatan S (2006). Myelomeningocele. In FD Burg et al., eds., Current Pediatric Therapy, 18th ed., pp. 377–380. Philadelphia: Saunders Elsevier.
- Liptak GS (2007). Neural tube defects. In ML Batshaw et al., eds., Children with Disabilities, 6th ed., pp. 419–438. Baltimore: Paul H. Brookes Publishing.
- Liptak GS, Dosa NP (2010). Meningomyelocele. Pediatrics in Review, 30(31): 443–450.
- U.S. Preventive Services Task Force (2009). Folic acid for the prevention of neural tube defects. Available online: http://www.ahrq.gov/clinic/uspstf09/folicacid/folicacidrs.htm.
|Primary Medical Reviewer||John Pope, MD - Pediatrics|
|Specialist Medical Reviewer||Louis Pellegrino, MD - Developmental Pediatrics|
|Last Revised||March 21, 2011|
Last Revised: March 21, 2011
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