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Spina bifida, also called myelodysplasia, is a is a developmental birth defect affecting the nervous system and causing irregular
development of the back bones, spinal cord, surrounding nerves, and the fluid filled sac that surrounds the spinal cord. This
neurological disorder can result in a portion of the spinal cord and the enclosed area develops outside, instead of inside, the body.
This allows the abnormal portion of the spinal cord to protrude through an opening in the bones. There may or may not be a
fluid filled sac surrounding the emerged spinal cord. The defect can occur anywhere along the spine.
Spina bifida occurs when the spinal bones fail to close properly during early formation. Spina bifida appears in about one in one
thousand births. It is, however, the most common of the physically disabling congenital abnormalities. Spina bifida begins when
a portion of the fetal spinal cord, during the third and fourth weeks of pregnancy, fails to close completely. As a result, the child
is born with a part of the spinal cord exposed on the back. A child born with spina bifida needs to have the exposed part of the
spinal cord corrected, to avoid additional damage to the spinal cord and to prevent infection.
Symptoms of Spina Bifida
A newborn with spina bifida appears at first glimpse to be normal, except for a small sac protruding from the spine. However,
the sac contains spinal fluid and damaged nerves that lead to the lower body. Within the first few days, surgery must be
performed to remove the sac and close the opening in the spine. Unfortunately, little can be done to repair the damaged nerves.
The following are the most common symptoms of spina bifida. However, each child may experience symptoms differently.
Symptoms may include:
• Unusual exterior of the baby's back, varying from a small, hairy patch or a dimple or birthmark, to a sac-like bulge that is
found along the back bone area.
• inability to move the lower legs (paralysis)
• bowel and bladder problems (i.e., constipation, excessive )
• Loss of feeling below the damaged area, especially in children born with a meningocele a birth defect in the bones of the
spine that involves swelling of the tissue covering the spinal cord and brain; or myelomeningocele a birth defect in which the
backbone and spinal canal do not close before birth.
The child may also have other problems related to spina bifida that include the following:
• hydrocephalus (increased fluid and pressure in the head area; occurs in about 80 to 90 percent of cases)
• heart problems
• lower than normal intelligence level
The symptoms of spina bifida may resemble other conditions or medical problems. Always consult your baby's physician for a
Diagnosing Spina Bifida
Diagnostic tests can be performed during pregnancy to evaluate the fetus for spina bifida. The tests include the following:
• Blood tests - The American College of Obstetrics and Gynecology (ACOG) recommends that a blood test be offered
between 15 to 20 weeks to all women who are pregnant who have not previously had a child with an Open Neural Tube Defect
(ONTD) and who do not have a family history of ONTD. This blood test measures alpha-fetoprotein (AFP) levels and other
biochemical markers in the mother's blood to determine whether her pregnancy is at increased risk for an ONTD. AFP is a
protein normally produced by the fetus that crosses the placenta into the mother's blood. Generally, if a fetus has an ONTD, the
alpha-fetoprotein level in the mother's blood will be increased. Although this test does not tell for certain whether a fetus has an
ONTD, it will determine which pregnancies are at greater risk, so that additional testing may be performed.
• Prenatal ultrasound (sonogram) - a diagnostic imaging technique which uses high-frequency sound waves and a
computer to create images of blood vessels, tissues, and organs. Ultrasounds are used to view internal organs as they function,
and to assess blood flow through various vessels. Prenatal ultrasound may be able to detect an ONTD, and may be used to
examine other organs and body systems of the fetus.
• Amniocentesis - a procedure that involves inserting a long, thin needle through the mother's abdomen into the amniotic
sac to withdraw a small sample of the amniotic fluid for examination. The fluid is then tested to determine the presence or
absence of an open neural tube defect. Small or closed defects may not be picked up by this test.
Spina Bifida Hydrocephalus
Hydrocephalus is a congenital condition in which an abnormal accumulation of fluid in the cerebral ventricles (one of a system of
four corresponding outlets within the brain that are continuous with the central canal of the spinal cord) causes enlargement of
the skull and applies pressure to the brain, destroying much of the neural tissue.
Up to nine out of ten children with spina bifida eventually develop hydrocephalus, caused by an excessive increase in the fluid
that normally cushions the brain from injury. The increase occurs because the spina bifida abnormality blocks the path through
which the fluid ordinarily flows. This condition is serious and, if not treated, may lead to death.
The pediatrician should suspect hydrocephalus if the baby’s head is growing more rapidly than expected. The condition is
confirmed by a computerized x-ray of the head, called a CT (computed tomography) scan or magnetic resonance imagery
(MRI). If hydrocephalus is present, surgery will be necessary to relieve the fluid buildup.
Not all babies will require surgical repair of spina bifida. Non-surgical management of spina bifida may include the following:
• positioning aids (used to help the child sit, lie, or stand)
• braces and splints (used to prevent deformity, promote support or protection)
Spina Bifida Types
• Spina bifida occulta - a mild form of spina bifida in which the spinal cord and the surrounding structures remain inside
the body, but the back bones in the lower back area fail to form normally. There may be a hairy patch, dimple, or birthmark over
the area of the defect. Other times, there may be no abnormalities in the area.
• Meningocele - a moderate form of spina bifida in which a fluid-filled sac is visible outside of the back area. The sac does
not contain the spinal cord or nerves.
• Myelomeningocele - a severe form of spina bifida in which the spinal cord and nerves develop outside of the body and
are contained in a fluid-filled sac that is visible outside of the back area. These babies typically have weakness and loss of
sensation below the defect. Problems with bowel and bladder function are also common. A majority of babies with
myelomeningocele will also have hydrocephalus, a condition that causes the fluid inside of the head to build up, causing pressure
inside of the head to increase and the skull bones to expand to a larger than normal size.
Approximately 80 percent of defects are found in the lower back area. The remaining 20 percent of the defects are located in the
back of the neck or upper back areas.
Spina bifida is a type of neural tube defect. Neural tube defects, including spina bifida (open spine) and anencephaly (open skull),
are seen in one out of 1,000 pregnancies.
Spina Bifida Pregnancy
During pregnancy, the human brain and spine begin as a flat plate of cells, which rolls into a tube, called the neural tube. If all or
part of the neural tube fails to close, leaving an opening, this is known as an open neural tube defect (or ONTD). This opening
may be left exposed (80 percent of the time), or covered with bone or skin (20 percent of the time). Spina bifida occurs when
the neural tube fails to close somewhere along the spine.
In over 95 percent of cases, an ONTD occurs without a prior family history of these defects. ONTDs result from a combination
of genes inherited from both parents, coupled with environmental factors. ONTDs are from a number of different causes or
influences, meaning "many factors," both genetic and environmental, contribute to their occurrence. For example, once a couple
has one child with spina bifida, the risk of having a second child increases to 2-3%; if the couple has two affected children, their
risk of having a third child increases to about 10%. A parent who has one child with spina bifida has a greater chance (one out
of a hundred) of having another. This increased frequency appears to be due to some combined effect of heredity and
Because the neural tube closes 28 to 32 days after conception and before many women are aware they are pregnant, normal
development of the brain and spinal cord may be affected during these first three to eight weeks of pregnancy by the following:
• Genetic problems, exposure to hazardous chemicals/substances, lack of proper vitamins and nutrients in the diet,
infection, and prescription drug or alcohol consumption.
Recently, attention has been focused on nutrition, and in the particular benefits in folate (B vitamin that is essential for cell
growth and reproduction) for reducing the incidence of spina bifida. Studies show that a woman who takes folate
supplementation before and during the early stages of pregnancy has a lower chance of having a child with spina bifida.
Research has found that folic acid (vitamin B-9), a nutrient found in some green, leafy vegetables, nuts, beans, citrus fruits, and
fortified breakfast cereals, can help reduce the risk of neural tube defects. For this reason, the American College of Medical
Genetics (ACMG) and the Centers for Disease Control and Prevention (CDC) recommend that all women of childbearing age
take a multivitamin containing folic acid.
If a couple has had a previous child with an ONTD, a larger amount of folic acid is recommended and can be prescribed by the
woman's physician or healthcare provider. This allows the woman to take it for one to two months prior to conception, and
throughout the first trimester of pregnancy, to reduce the risk of another child with ONTD. Current research is focused on
looking at how genes direct neurulation (the formation of the embryonic neural plate and its conversion into the neural tube).
Understanding this will assist in the prevention of neural tube defects.
Additional risk factors include:
• Maternal age (spina bifida is more commonly seen in teenage mothers).
• History of miscarriage
• Birth order (first-born infants are at higher risk).
• Low-income status (Children born into lower income families are at higher risk for developing spina bifida. It is thought
that a poor diet, lacking essential vitamins and minerals, may be a contributing factor).
Genetic counseling may be recommended by your physician to discuss the risk of recurrence in a future pregnancy, as well as
vitamin therapy (a prescription for folic acid) that can decrease the recurrence risk for ONTDs. Supplemental folic acid, a B
vitamin, if taken one to two months prior to conception and throughout the first trimester of pregnancy, has been found to
decrease the reoccurrence of ONTDs for couples who have had a previous child with an ONTD.
In recent years, established surgeons have developed an experimental technique for performing prenatal surgery to correct this
condition before the child is born. The surgery, used in a research setting and performed between weeks 19 and 25 of
pregnancy, was first supported by the March of Dimes. Currently, the National Institute of Child Health and Human
Development (NICHD), part of the National Institutes of Health (NIH), is conducting a clinical trial to determine whether
carrying out the procedure while the infant is in the womb leads to an overall improvement for these children with minimal risks.
Any woman who is considering becoming pregnant should begin taking supplemental folate; consult your physician for more
information before adding this substance to your diet.
Caring for a Child with Spina Bifida:
The primary goal of managing spina bifida is to prevent infection and to preserve the spinal cord and nerves that are exposed
outside of the body. Specific management of spina bifida will be determined by your baby's physician based on:
• The baby's gestational age, overall health, and medical history.
• The extent and type of spina bifida.
• The baby's tolerance for specific medications, procedures, or therapies.
• Probability of the progression of spina bifida.
• Your personal opinion or preferences.
A cesarean delivery is often performed to decrease the risk of damage to the spinal cord that may occur during a vaginal
delivery. Babies born with a meningocele or a myelomeningocele usually require care in the neonatal intensive care unit (NICU)
for evaluation and for surgery to close the defect. Surgery can help manage the problems, but it can not restore muscle function
or sensation to a normal condition. Surgical interventions may be needed for the following:
• Repair and closure of the abrasion
• Orthopedic problems may include curving in the back, hip dislocations, ankle and foot deformities, and contracted
muscles. Babies and children with spina bifida are also vulnerable to breaking their bones since their bones may be weaker than
• Bowel and bladder problems may require surgery to improve function in elimination, for incontinence (unable to restrain
natural discharges), constipation, or when the bladder does not empty completely.
Spina Bifida Treatment
Since spina bifida is a life-long condition with no cure, supervision and care often focuses on preventing or minimizing
deformities and maximizing the child's capabilities at home and in the community. Positive reinforcement will encourage the child
to strengthen his/her self-esteem and promote as much independence as possible. The full extent of the problem is usually not
completely understood immediately after birth, but may be revealed as the child grows and develops.
Babies with spina bifida are at high risk for developing a latex allergy due to exposure to latex from multiple medical and surgical
procedures. Precautions are taken by the healthcare team to reduce the baby's exposure to products that contain latex.
Preventing the child from being exposed to latex will reduce the likelihood that he/she will acquire the sensitivity. Many products
used by infants contain latex (bottle nipples, pacifiers, teething toys, changing pads, mattress covers, and some diapers) and
should be avoided. Your baby's healthcare providers can help you identify products that contain latex and also find products that
Muscle weakness or paralysis - The nerves leading to the lower part of the body are damaged, the muscles in the legs may be
very weak or even paralyzed in children with spina bifida. Their joints also tend to be very stiff, and many babies with this
disorder are born with abnormalities of the hips, knees, and feet. Surgery can be performed to correct some of these problems,
and the muscle weakness can be treated with physical therapy and special equipment, such as braces and walkers. Many
children with spina bifida eventually can stand and some do walk, though the learning process is often long and extremely
Bowel and bladder problems - Often the nerves that control bowel and bladder function are impaired in children with spina
bifida. As a result, these children are more likely to develop urinary tract infections and damage to the kidneys due to abnormal
urine flow. Special techniques are available to develop urinary control and minimize infections. Your pediatrician will advise you.
Bowel control also is a problem, but usually can be achieved by children with this disorder. It may, however, take a great deal of
time, patience, careful dietary management (to keep the stools soft), and the occasional use of suppositories or other bowel
stimulants, or special enemas.
Infection - Parents of children who have spina bifida and hydrocephalus or urinary tract problems must be ever alert for signs
of infection. Fortunately, the types of infections that occur in these cases usually can be treated effectively with antibiotics.
Educational and social problems - Seven out of ten children with spina bifida have developmental and learning disabilities
requiring some sort of special education. Many also need psychological counseling and tremendous emotional support in order to
deal with their medical, educational, and social problems.
Spina Bifida Management
Parents of a child with spina bifida need more than one physician to manage their child’s medical care. In addition to the basic
care your pediatrician provides, this disorder requires a group method that involves neurosurgeons, orthopedic surgeons,
urologists, rehabilitation experts, physical therapists, psychologists, and social workers. Many medical centers run special spina
bifida clinics, which offer the services of all these health professionals in one location. Having all members of the team together
makes it easier for everyone to communicate and frequently provides better access to information and assistance when parents
The child is usually also evaluated by an urologist and orthopedist to evaluate the bladder, spine curvature, and leg deformities if
present. The child will usually be tested for bladder function and, if there are problems, a catheterization schedule may be started
and the parents taught how to do this - a small catheter is inserted temporarily into the bladder through the urethra (the opening
through which we urinate) to drain the urine. The procedure isn't difficult or painful to perform. The parents are usually given
information about spina bifida from either the physicians or a nurse coordinator for the spina bifida program.
Fortunately, with the proper medical care, children with spina bifida can lead active and productive lives. Many children with
spina bifida are successful in school and many are actively involved in modified sports activities despite their physical challenges.
Twenty year follow-up studies of children with spina bifida show that they enter college in the same proportion as the general
population, and many are actively employed. With recent progress in care for these children, their outlook continues to improve.