Home > 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
The disease can be mild or severe.
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.
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,
Many children who have severe
spina bifida develop an allergy to latex (a type of rubber).
A pregnant woman
can have a blood test (maternal serum triple or quadruple screen) and a
fetal ultrasound to check for spina bifida and other
problems with the
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.
After birth, doctors can tell if a baby has spina bifida by how the
baby’s back looks. The doctor may do an
MRI, or a
CT scan to see if the defect is mild or severe.
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:
during pregnancy, a woman can help prevent spina bifida in her child.
All foods made from grains and sold in the United States
have folic acid added. It helps prevent children from being born with spina
Learning about spina bifida:
Living with spina bifida:
Health Tools help you make wise health decisions or take action to improve your health.
There are no symptoms that indicate a
pregnant woman has a fetus with
The appearance and symptoms
of a child who is born with spina bifida depend on how severe the condition
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:
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
Spinal cord damage caused by severe spina bifida may cause
problems such as:
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.
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,
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:
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.
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
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:
Spina bifida often results in severe curvature of the
spine—scoliosis, kyphosis (hunchback), or both. Periodic
physical exams of the
spine usually are recommended.
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
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
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
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
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
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
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.
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
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
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:
problems can occur with severe spina bifida and may get worse as the child
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.
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
Your health care team will
provide you with exercises to do with your baby. To promote activity, you can
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:
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
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
catheter into his or her bladder at least 4 times a
day. CIC lets urine flow out of the
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
enemas, stool softeners, or laxatives to help them
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
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
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
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
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.
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.
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
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.
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.
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.
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.
March 21, 2011
John Pope, MD - Pediatrics & Louis Pellegrino, MD - Developmental Pediatrics
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