1.
What are Neural Tube Defects?
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.
Babies born with anencephaly have underdeveloped brains and
incomplete skulls. Most infants born with anencephaly do not
survive more than a few hours after birth. Encephalocele results
in a hole in the skull through which brain tissue protrudes.
Although most babies with encephalocele do not live or are severely
retarded, early surgery has been able to save a few children.
2. What is Spina Bifida?
Spina
bifida is the most frequently occurring permanently disabling
birth defect. It affects approximately one out of every 1,000
newborns in the United States.
Spina bifida, the most common NTD, is one of the most devastating
of all birth defects. It results from the failure of the spine
to close properly during the first month of pregnancy. In severe
cases, the spinal cord protrudes through the back and may be
covered by skin or a thin membrane. 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 surgeries and other
extensive medical care. The condition can also cause bowel and
bladder complications. A large percentage of children born with
spina bifida also have 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. Most
children born with spina bifida live well into adulthood as
a result of today's sophisticated medical techniques.
3. Who is at higher risk?
Women
who:
• have a child with spina bifida
•
have
spina bifida themselves
•
have
already had a pregnancy affected by any neural defect
are at greater risk of having a child affected by spina bifida
or another neural tube defect. These women may need to get a
prescription for folic acid before trying to become pregnant,
so it's important to plan any future pregnancy. Please speak
with your health care provider about folic acid.
4. I've heard that children with spina bifida have learning
problems. Is this true?
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.
5. How can we help those with learning problems?
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).
6. What about the physical limitations?
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.
7. 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 SBAA'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 secondary conditions associated with spina
bifida are latex allergy, tendinitis, obesity, skin breakdown,
gastrointestinal disorders, learning disabilities, attaining
and retaining mobility, depression, and social and sexual issues.
8. What is latex allergy?
Allergic
responses to latex (rubber) products. Typical symptoms include
watery eyes, wheezing, hives, rash, swelling, and in severe
cases, anaphylaxis (a life threatening reaction). These responses
can occur when items containing latex touch the skin, the mucous
membranes (like the mouth, genitals, bladder or rectum), open
areas or bloodstream (especially during surgery).
9. Who is allergic to latex?
While
it is not known exactly how this allergy develops, anybody can
develop a latex allergy. However, certain groups of individuals
have been identified as having a greater risk of becoming latex
allergic. Those at higher risk include people who are frequently
exposed to latex, such as children and adults with spina bifida
and health professionals. Research has shown that spina bifida
patients have the potential to become allergic (to some degree)
to latex. Anyone with a latex allergy should avoid exposure
to all products that contain latex.
10. What are some common products that contain latex?
Catheters,
elastic bandages, baby bottle nipples, pacifiers and balloons
are just a few common products that contain latex. For a more
extensive list of items containing latex often found at home,
in your community, and in hospitals, contact the SBAA. If you
are in doubt about a specific product, check with its distributer
or manufacturer.
11. Can anything be done to prevent spina bifida?
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. Recent studies have shown that folic
acid is one factor that may reduce the risk of having an NTD
baby. 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.
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). All 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:
CLICK HERE to contact our National Information and Resource
Center
CLICK HERE for our brochure: Plan Ahead do what you can - Folic
acid: Reducing the risk of spina bifida and other neural tube
defects.
12. What is Folic Acid?
Folic
acid, a common water-soluble B vitamin, is essential for the
functioning of the human body. During periods of rapid growth,
such as pregnancy and fetal development, the body's requirement
for this vitamin increases. Folic acid can be found in multivitamins,
fortified breakfast cereals, dark green leafy vegetables such
as broccoli and spinach, egg yolks, and some fruits and fruit
juices. However, the average American diet does not supply the
recommended level of folic acid.
