How often does Spina Bifida occur?
What are the physical limitations associated with Spina Bifida?
What are secondary conditions associated with Spina Bifida?
Is it true that children with Spina Bifida can have learning difficulties?
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What are Neural Tube Defects
(NTDs)?
Neural Tube Defects (NTDs) are serious birth defects
that involve incomplete development of the brain, spinal cord and/or protective
coverings for these organs. There are 3 types of NTDs; anencephaly, encephalocele,
and Spina Bifida.
What is Spina Bifida?
Spina Bifida is the most common NTD. It results from
the failure of the spine to close properly during the first month of pregnancy
leaving a gap or split and causing damage to the central nervous system.
Types of Spina Bifida
There are three main types of Spina Bifida; Myelomeningocele,
Meningocele, and Occulta.
Spina Bifida Cystica (cyst-like) includes Myelomeningocele and Meningocele.
Myelomeningocele This is the most severe form of Spina Bifida. The spinal cord protrudes through the open vertebrae of the spine. This typically results in varying degrees of paralysis of the legs, and causes bowel and bladder complications. Myelomeningocele is the most common form of Spina Bifida.
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Meningocele
In this form of Spina Bifida, the sac that protrudes
contains tissues that cover the spinal cord and cerebro-spinal fluid.
There is usually less nerve damage, and therefore there are usually fewer
physical complications for the child. This is the least common form of
Spina Bifida.
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Surgery to close a newborn’s back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord. Because of the paralysis resulting from the damage to the spinal cord, people born with Spina Bifida may need repeated surgeries and other extensive medical care. Approximately 85% of the babies born with Spina Bifida also develop hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called “shunting” which relieves the fluid build-up in the brain by redirecting it into the abdominal area.
Spina Bifida Occulta (hidden) This is a very mild and common form and very rarely causes disability. There is a slight deficiency in the formation of (usually) one of the vertebrae. It may have visible signs of a dimple or small hair growth on the back. However, many people are unaware that they have Spina Bifida Occulta as they have no symptoms or signs.
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The information on these pages was provided by the Spina Bifida Association of America and the Association for Spina Bifida and Hydrocephalus. For further information, use these links to visit their web sites:
Spina Bifida Association of America |
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Association for Spina Bifida and
Hydrocephalus |
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How often does Spina Bifida occur?
Every hour, 24 hours a day, somewhere in the United
States, a baby is born with Spina Bifida. It occurs more frequently
than
multiple sclerosis (MS), Muscular dystrophy (MD), polio and cystic fibrosis
combined. Spina Bifida is the most frequently occurring permanently
disabling
birth defect. Spina Bifida affects approximately one out of every 1,000
newborns in the United States. (The good news is that the incidence
has been reduced partially in newborns due to more women taking folic
acid!)
Despite its prevalence this birth defect was virtually unknown until recent years. Due to medical advances, nearly all newborns with Spina Bifida survive. Thanks to sophisticated medical techniques and aggressive medical care, we can expect most children born with Spina Bifida to have normal intelligence, live well into adulthood, and be able to become contributing members of society.
What causes Spina Bifida?
The cause of Spina Bifida is not yet known. It is believed
that genetic and environmental factors interact to play a part in its
occurrence. Prenatal diagnostic testing techniques are available to detect
Spina Bifida in the early months of pregnancy. More research is needed.
Only through finding the cause will a cure or prevention become possible.
There is encouraging news!
Research has found that taking the B-vitamin folic
acid every day can help reduce the risk of having a child with Spina Bifida
or other neural tube defects (NTDs). Birth Defects can happen in any family.
Many things can affect a pregnancy, including family genes and things
women may come in contact with during pregnancy. Taking folic acid cannot
guarantee having a healthy baby, but it can help.
The challenge? Women need to take folic acid before they become pregnant. NTDs like Spina Bifida occur during the first month of pregnancy--before most women know they are pregnant.
The goal? All
women of childbearing age should take a vitamin supplement with folic
acid every day!
The Spina Bifida Association of America advises women to follow the U.S.
Public Health Service folic acid recommendations. Click
here to go to further information about including folic acid in your
diet.
Folic Acid
Birth defects can happen in any family. Many things
can affect a pregnancy, including family genes and the things women may
come in contact with during pregnancy. Recent studies have shown that
folic acid is one factor that may reduce the risk of having a baby with
an NTD. Taking folic acid cannot guarantee having a healthy baby, but
it can help. Taking folic acid before and during early pregnancy reduces
the risk of Spina Bifida and other Neural Tube Defects.
Folic acid, a common water-soluble B-vitamin, is essential for the functioning of the human body that helps build healthy cells. “Water soluble” means it does not stay in your body for very long, so you need to take it every day to help prevent neural tube defects. During periods of rapid growth, such as pregnancy and fetal development, the body’s requirement for this vitamin increases.
Here's what you can do:
- Take a vitamin with 400 micrograms (mcg) folic
acid every day.
- This amount is also written as 0.4 milligrams (mg). Women should take this amount every day while not planning to become pregnant.
- If you have a child with Spina Bifida, have Spina
Bifida yourself, or have had a history of pregnancy affected by a neural
tube defect, and you are thinking about becoming pregnant, you need
a higher dose of folic acid. You should take 4000 micrograms (mcg) of
folic acid by prescription for 1 to 3 months before becoming pregnant.
- This amount is also written as 4.0 milligrams (mg). Taking this amount of folic acid by prescription may reduce the chance of a neural tube defect like Spina Bifida in future pregnancies. Please see your doctor.
- Do not take this extra folic acid by taking more multivitamins because too much of some of the other vitamins could harm you and your future baby.
- Plan your next pregnancy.
- Speak with your health care provider about your personal risk of having a baby with a neural tube defect. You may need to get a prescription for folic acid before you try to become pregnant.
For more information including foods rich in folate, reducing the risk of Spina Bifida and other neural tube defects, and other folic acid materials, click the SBAA link below.
Spina Bifida Association of America |
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What are the physical limitations
associated with Spina Bifida?
Children with Spina Bifida need to learn mobility skills,
and often with the use of crutches, braces, or wheelchairs can achieve
more independence. Also, with new techniques children can become independent
in managing their bowel and bladder problems. Physical disabilities like
Spina Bifida can have profound effects on the child’s emotional
and social development. It is important that health care professionals,
teachers, and parents understand the child’s physical capabilities
and limitations. To promote personal growth, they should encourage children
(within the limits of safety and health) to be independent, to participate
in activities with their non-disabled peers and to assume responsibility
for their own care.
What are secondary conditions associated with
Spina Bifida?
Special attention is needed to identify and treat secondary
disabilities. Due to the wide range of neurological damage and mobility
impairment it can be difficult to identify some secondary disabilities.
Attention should be focused on the psychological and social development
of children and young adults with Spina Bifida. Many recent studies, including
the Spina Bifida Association of America’s Adult Network Survey,
clearly indicate the presence of emotional problems that result from factors
such as low self-esteem and lack of social skills training. Examples of
other secondary conditions that are associated with Spina Bifida that
a person may experience include latex allergy, tendonitis, obesity, skin
breakdown, gastrointestinal disorders, learning disabilities, difficulty
attaining and retaining mobility, depression, and social and sexual issues.
Is it true that children with Spina Bifida
can have learning difficulties?
Some children with Spina Bifida do experience learning
problems. They may have difficulty with paying attention, expressing or
understanding language, organizing, sequencing and grasping reading and
math. Early intervention can help considerably to prepare these children
for school. Students should be in the least restrictive environment and
their day-to-day activities should be as “normal” as possible.
It often helps to have a psychological evaluation, which tests the child’s
intelligence, academic levels (reading, spelling, math, etc.), and basic
learning abilities (visual perception, receptive and expressive language
skills).
What do our children need?
As with any child, children with Spina Bifida need
love, understanding, and encouragement. In addition, like others with
physical and/or mental handicaps, they also need extra help with their
additional challenges. By working together as a team, parents, doctors,
therapists, and educators help our children reach their highest potential.
ALPHA-FETOPROTIEN (AFP) - High levels of this protein in the mother’s blood or amniotic sac often associated with a neural tube defect.
AMBULATORY- Capable of Walking
AMNIOCENTESIS- A process by which the amniotic (or fetal) sac is punctured by a needle and fluid removed. The amniotic fluid removed can then be studied for detection of neural tube defects and chromosomal abnormalities.
ANOMALY- An organ existing in abnormal form, structure or location.
APNEA- The cessation of breathing noted by color changes, pallor and/or cyanosis and lack of chest wall movement.
ARNOLD-CHIARI MALFORMATION- See Chiari Malformation.
CATHETER- A tube used to remove fluid from a cavity. A urinary catheter is passed through the urethra into the bladder in order to withdraw urine.
CEREBROSPINAL FLUID (CSF)- A water-like liquid made by the brain which fills the ventricles inside the brain and surrounds the brain and spinal cord to provide nourishment and protect them from shock.
CHIARI MALFORMATION- The Chiari (II) is a malformation of the hindbrain, or brainstem associated with myelomeningocele and can cause Hydrocephalus and other symptoms. The cerebellum may be elongated and drop down along the lower brainstem, through the case of the skull and into the cervical canal: the fourth ventricle may be elongated and enter the cervical canal. Although most people with myelomeningocele have the Chiari Malformation, it is estimated that only 20-30 percent become symptomatic.
CLUBFOOT- A deformity of the foot which is twisted at the ankle so that it cannot rest properly on the ground.
CAT SCAN- (Computerized Tomogram)- An x-ray exam in which a scanner revolves around the body and takes a picture of the organs inside the body.
CONGENITAL- Existing at birth.
CREDE- A technique which consists of pressing down and inward with the hand over the bladder to empty it.
CYANOSIS – Bluish tinge around the mouth or nail indicating a lack of oxygen.
CYSTOMETRIC EXAM- An examination which measures the pressure inside the bladder. It also aids in diagnosis of bladder muscle condition.
DECUBITUS- Pressure sore or skin ulcer.
DISLOCATED- The displacement of a bone from its normal position in its joint.
ELECTROENCEPHALOGRAM- A graphic picture of the electrical impulses of the brain, or brainwaves.
ENEMA- Installation of fluid into the rectum to empty the bowel.
ESOPHAGUS- The muscular tube extending from the back of the throat to the stomach.
FERTILITY- Capable of reproducing.
FOLIC ACID- A ‘B’ vitamin which is necessary to form essential body proteins and genetic materials. It promotes the synthesis of the oxygen-carrying blood protein hemoglobin.
FONTANEL- The soft spot on a baby’s skull where the bones have not yet grown firmly together.
GAIT- The manner of walking.
GENETICIST- A physician or professional person who counsels parents on the risk of having an infant with a particular inherited disorder.
HERNIATE- A protrusion of a loop of tissue through an abnormal opening.
HYDROCEPHALUS- The increased accumulation of cerebrospinal fluid (CSF) within the ventricles of the brain.
INCONTINENCE- The inability to control urine or bowel movements.
I.V. (Intravenous)- Used to inject fluid into a vein. An I.V. may be used to provide nutrition or may be a means of injecting medicine into the blood stream.
I.V.P. (Intravenous pyelogram)- A test which takes an x-ray of the kidneys. The person is given an injection of dye through the I.V. which “lights up” the kidneys on the x-ray.
KYPHOSIS- An exaggerated outward curvature of the spine.
LORDOSIS- An exaggerated inward curvature of the spine.
MAGNETIC RESONANCE IMAGERY (MRI)- A scan which uses magnetic energy to give a clear black and white picture of the brain, cervical canal, and spine. Does not involve radiation.
MENINGES- Three layers of membranes covering the brain and spinal cord.
MENINGITIS- Infection or inflammation of the meninges.
MENINGOCELE- A protrusion of the meninges out of an opening in the vertebral column. A meningocele contains only cerebrospinal fluid and no neural tissue.
MYELOMENINGOCELE- or “open spine” is a protrusion of the meninges, spinal cord and nerves out of an opening in the vertebral column. This spinal cord defect may be covered by skin, or a thin membrane. Known also as spina bifida.
NEUTRAL TUBE DEFECT- A birth defect somewhere in the neural tube, which consists of the brain and spinal cord.
NEUROGENIC BLADDER- Loss of nerve supply to the bladder resulting in an inability to voluntarily control the bladder.
NEUROLOGICAL - Pertaining to the nervous system.
NEUROLOGIST - A physician who specializes in the physiologic functions of the brain and nervous system eg: this doctor may run tests if seizures are suspected.
NEUROSURGEON – A physician who specializes in surgery to the brain and nervous system. A neurosurgeon performs the initial closure surgery in spina bifida and a placement of a ventricular shunt if necessary.
N.P.O. – Nothing by mouth (literally nothing passed orally).
OCCUPATIONAL THERAPIST – A therapist who specializes in child development, and who will evaluate your child’s skills, especially in the areas of fine motor and eye-hand coordination, and general development. The OT can assist you and your child in daily living skills, and is mainly concerned with hand strength and use of arms and hands.
OPISTHOTONOS – Backward arching of the head, neck or back with stiffness of the entire body (Chari II symptom).
OPHYHALMOLOGIST – A physician who specializes in the treatment of disorders of the eyes.
ORTHOPEDIST – A physician specializing in problems relating to bones, joints and muscles.
PARALYSIS – A loss of voluntary movement.
PARAPLEGIA - A condition in which both lower limbs are paralyzed.
PEDIATRICIAN – A medical doctor who specializes in care of children. This physician may help coordinate your child’s care, and during regular office visits may check your child’s weight, head size and take a urine specimen to check for bladder infections (your child may have a bladder infection and not have symptoms), as well as treat your child for illness.
PHYSIATRIST - A physician who specializes in rehabilitation and may plan and coordinate physical, occupational, speech and other types of therapy. This doctor may also coordinate the treatment and evaluation of an individual, with the other members of a health-care team.
PHYSICAL THERAPIST - A developmental specialist who evaluates the range of motion of joints, muscle strength and development and functional level of the child. The physical therapist uses the information from the evaluation to design an appropriate treatment and activity program.
PRENATAL - Before Birth.
PULSE – The rate and power of the heartbeat.
PYRAMIDAL TRACT – A band of nerve fibers originating in the cortex and connecting with cell bodies in the spinal cord. It plays an important part in the control of voluntary movement.
RECTUM – The lower part of the large bowel which terminates in the anus.
REFLEX – A response meditated by the nervous system.
RENAL DAMAGE – Or kidney damage. Damage to the kidneys which may occur in children with spina bifida as a result of repeated urinary infections or reflux (back flow) of urine up the ureters into the kidneys.
RESPIRATORY DISTRESS – Noisy, congested breathing with difficulty breathing and retractions of the chestwall.
RETARDATION – Slowness in development.
RETRACTIONS – The breastbone and area below the ribcage sink in on inspiration when a child is having difficulty breathing.
SCOLIOSIS – A lateral curvature of the spine, often in an S-shape.
SEISURES – Convulsions.
SEXUALITY – Sexual character and activity.
SHUNT – A system to control hydrocephalus. It consists of a one-way valve and a small plastic tube, one end of which is placed on one of the ventricles where the cerebrospinal fluid is formed. The plastic tube is then placed under the skin behind the ear, where it is passed between the skin and underlying bone and muscle and into the abdominal cavity. The cerebrospinal fluid which is passed into the abdominal cavity is then reabsorbed into the bloodstream.
SPASTICITY – Stiffness or position that is difficult to release.
SPINA BIFIDA – Failure of the bones of the spine to close. Lay-term for myelomeningocele.
SPINA BIFIDA CYSTICA – A term covering both meningocele and myelomeningocele where the meninges protrude through the bifida (split) spinal column forming a sac or cyst filled with cerebrospinal fluid.
SPINA BIFIDA OCCULTA – Failure of one or more of the vertebrae to close with the skin intact and no sac visible on the back. A child with spina bifida occulta usually has no problems, and the defect may go undetected until a routine x-ray is taken.
SPINAL CORD – A column of nervous tissue which is located within the vertebral column and directly connected to the brain. All nerves to the trunk and extremities are located within the spinal cord. The brain controls muscles of the body through nerves in the spinal cord.
STOMA – That part of the loop of bowel to which the ureters are attached in an ileostomy and which is visible on the abdomen. It is sometimes referred to (non-medically) as a “cherry” because of its red color.
STRIDOR – Harsh croupy noise associated with breathing.
SUPPOSITORY – Medicated mass inserted into the rectum to aid bowel movement.
TALIPES – A condition in which the foot is fixed in some abnormal position as a result of muscle imbalance, and is often congenital.
TETHERING – Binding of the spinal cord to surrounding tissue.
TRACHEA – Windpipe.
ULTRASOUND – The use of high frequency sound wave echoes to outline the shape of various tissues and organs in the body. Ultrasound is frequently used in prenatal care to establish the baby’s due date, whether there is more than one baby, or detect some birth defects such as spina bifida and hydrocephalus.
URETER – Either of the two tubes through which urine passes from the kidneys into the bladder.
URETHRA – The tube which routes urine from the bladder to the outside of the body, the urethra goes through the penis in the male and to the perineum in the female.
URETHRAL SPHINCTER – A ring like muscle that closes at the end of the urethra (the opening of the bladder).
URINALYSIS – Examination of the urine as an aid in detecting and diagnosing infection.
URINARY BLADDER – A sac in the pelvic cavity that serves as a reservoir for urine.
URINE CULTURE AND SENSITIVITY – A sample of urine is placed in a culture to grown out the colonies of bacteria which will be identified and tested for their sensitivity to various antibiotic medicines.
UROLOGIST – A physician who specializes in surgery and problems related to the urinary tract.
VCUG (Voiding cystourethogram) – An x-ray test to show the flow of urine from the bladder through the urethra.
VENTRICLES – Fluid filled spaces within the brain. They become swollen in hydrocephalus.
VENTRICLE SHUNT – A tube placed within the ventricles and used to prevent brain damage by draining excess fluid from the ventricles to another part of the body.
VERTEBRAE – The bony segment of the spinal column. 33 vertebra make up the vertebral column or back bone.
The information on these pages was provided by the Spina Bifida Association of America and the Association for Spina Bifida and Hydrocephalus. For further information, use these links to visit their web sites:
Spina Bifida Association of America |
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Association for Spina Bifida and
Hydrocephalus |
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Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. Persons with Spina Bifida are urged to discuss their particular symptoms and situations with their personal physician.
Notice: The information provided here is for informational, educational and entertainment purposes only. It is not intended to replace, and should not be interpreted or relied upon as, medical or professional advice. Your use of this site means that you agree to the terms and conditions detailed in our disclaimer.
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