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Frequently
Asked Questions:
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What is Spina Bifida?(top
of page)
Spina Bifida (SB) has been
the number one permanently disabling birth defect in the U.S. However, new
surgical techniques are available which can be expected to change this
dramatically. SB literally means, "cleft spine". Paralysis and bladder control
problems may result. In general, the higher the cleft on the child’s back, the
more severe the paralysis. However, about 80% of SB clefts are in the lower
back where they cause fewer problems. As the baby grows in the womb, the spinal
cord and surrounding tissues may not develop normally, and the spine may
actually fail to close causing a cleft. In the last few years, promising new
surgeries have been developed that can be performed on a baby while the spine
is still growing in the womb.
How many people have Spina Bifida?(top
of page)
It is estimated that there are approximately 70,000 people in the
United States living with some form of SB.
How is Spina Bifida diagnosed?(top
of page)
SB may be diagnosed prenatally by high-resolution ultrasound or by testing the
mother for high levels of alpha-fetaprotein. Most health care providers now
routinely offer pregnant women a blood test called the maternal serum
alpha-fetoprotein (MSAFP) screening test. This test detects pregnancies that
demonstrate a higher-than-average risk for SB, as well as certain other birth
defects.
What are the causes of Spina Bifida?(top
of page)
SB is thought to be caused by a lack of folic acid in women during
their first three weeks of pregnancy. The spinal cord forms very early in the
fetus and women often don’t know they are pregnant until after the it has been
formed. Studies have shown that taking folic acid one month before pregnancy
and during the first trimester reduces the risk of having a second SB baby by
70%. Additionally, women with certain chronic health problems, including
diabetes and seizure disorders treated with certain anticonvulsant medications
have an increased risk (approximately 1/100) of having a baby with SB.
Other environmental factors include parental exposure to Agent Orange.
President Clinton signed the Agent Orange Benefits Act, Public Law 104-204,
into law in 1996. The law established a benefits package for Vietnam veterans'
children who were born with SB as a result of exposure of one or both parents
to herbicides during active service in Vietnam.
Is ethnicity a factor in Spina Bifida?(top
of page)
Somewhat. SB occurs more frequently among Hispanics and whites of
European extraction and, less commonly, among Ashkenazi Jews, most Asian ethnic
groups and African-Americans.
Are all cases of Spina Bifida the same?
(top of page)
No. There are three types of SB, including SB Occulta, Meningocele and
Myelomeningocle. The later two types are known collectively as SB Manifesta,
which occurs in about one out of every 2000 births. About 4% of SB Manifesta
children have the Meningocele form, while about 96% have the Myelomeningocele
form. The Myelomeningocele form is the most severe form of SB, and until
recently, most children with this form of the disease died at or shortly after
birth. It occurs in this form in about 96% of cases. Many children born with
this type of SB have bowel and bladder problems that require catheterization.
In this type of the disease, a portion of the spinal cord protrudes through the
back. In some cases, the protrusions are covered with skin, while in others
tissue and nerves are exposed. Until the advent of new surgical techniques in
the last ten years, hydrocephalus, an accumulation of fluid on the brain,
occurred in 90% of cases of myelonemingocele. Fortunately, new surgeries have
become available that have reduced the number of SB babies born with
hydrocephalus significantly.
In the Meningocele form of the disease, while the spinal cord remains intact,
the protective covering around the spinal cord has pushed out through the
opening in the vertebra in a sac called the Meningocele. However, this can be
surgically repaired in most cases.
The SB Oculta form of the disease is harmless
and has no symptoms and requires no treatment. It occurs when there is an
opening in one or more of the vertebrae of the spinal column without apparent
damage to the spinal cord. It is estimated that as much as 40% of the U.S.
population may have this form of the disease, and many may know even be aware
of it.
What do parents need to know about Spina Bifida and bladder control?
Many children with SB have bladder control
problems. Like all children, kids with Spina Bifida want to spend more and more
time with their friends as they grow up, especially after they start school.
Sometimes it’s hard for a parent of a special needs youngster to transition
their child from diapers to catheters. But moving from diapers to catheters can
make all the difference to a SB child in social situations.
How can I help me child have a normal social
life besides transitioning my child from diapers to catheters?
Check out BlazeSports Clubs of America, TM and
get your child involved in wheelchair sports and other activities with other
children with SB of the same age.. There’s probably a chapter near you. Click
here.
UroMed’s specializes in urological products. Our
trained Urological Consultants, many of whom use these products themselves,
understand the needs of children with SB. And they can walk you or your child
through the process of learning how to use catheters. UroMed provides “peer”
support, which means you or your child can speak with a UroMed Urological
Consultant confidentially and get the information you need.
What do I need to know when choosing a catheter for my SB child?(top
of page)
UroMed also understands the complications involved in selecting a
catheter for the SB child, including latex allergies and DEHP-placticzed PVC
allergies.
Latex Allergies: Between 18% and 73% of children
with SB are allergic to latex (natural rubber), due to frequent exposure to
rubber products during repeated surgeries and catheter usage in the early part
of their lives. Approximately 34% of children without SB who have had three or
more surgical procedures develop latex allergies. In cases of SB, only
non-latex catheters should be used. Symptoms can be very serious and range from
mild skin irritation to life threatening anaphylactic shock.
DEHP-plasticized PVC Allergies:
Everyone is exposed to small levels of DEHP in
everyday life. However, some individuals can be exposed to high levels of DEHP
through certain medical procedures. DEHP can leach out of plastic medical
devices such as catheters into solutions that come in contact with the plastic
Exposure to DEHP has produced a range of adverse
effects in laboratory animals, but of greatest concern are effects on the
development of the male reproductive system and production of normal sperm in
young animals. While no studies have been done on humans to date, .in view of
the available animal data, precautions should be taken to limit the exposure of
the developing male to DEHP.
How can I get my insurance company to pay for urological products?
(top of page)
UroMed understands that the paperwork involved in insurance can be a major
hassle, especially for busy parents caring for a child with Spina Bifida.
That's why we handle all the paperwork for you. In most cases, UroMed can bill
Medicaid, Medicare, PPOs, HMOs and other types of insurance. Many parents of
children with SB who were unable to get their insurance company to pay for
their child's urological products through their own efforts, have found that
UroMed's experienced staff has been able to obtain insurance coverage for their
child's urological supplies. Please complete the form on this page and a
UroMed representative will contact you to begin the coverage verification
process.
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