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Understanding Spina Bifida
• What is Spina Bifida?
• How common is Spina Bifida and what causes it?
• How is Spina Bifida detected during pregnancy?
• How will my pregnancy be managed now that Spina Bifida has been detected?
• How will the Spina Bifida be treated after birth?
• What is the long-term outlook for babies with Spina Bifida?
• What are the chances I could have another baby with Spina Bifida?
• What can I expect from the specialists at Morgan Stanley Children's Hospital?
• Management of Myelomeningocele Study (MOMS)
• Watch a Brief Video on an Introduction to MOMS
WHAT IS SPINA BIFIDA?
Spina bifida is the most common neural tube defect (NTD),
a birth defect of the brain and spinal cord. The most severe
form of spina bifida, known as myelomeningocele, results
in a sac-like lesion along the spine where the spinal cord
and the nerves are open and exposed; there is no protective
skin or backbone covering. The less serious forms of spina
bifida are meningocele, in which the spinal cord itself is
not damaged but its protective covering is exposed, and
spina bifida occulta, in which only the bones of the spine
are malformed but the nerves and spinal cord are normal
and covered by skin. Throughout this information sheet,
the discussion of spina bifida will be largely focused on
myelomeningocele, the most severe form of the condition.
The damage caused by spina bifida varies, depending on
its location along the spinal column and to what extent
the spinal nerves are affected. About 80% of spina bifida
lesions are on the lower back.
Spina bifida can be surgically repaired after birth, but the
nerve damage is permanent, and can result in paralysis,
sensory loss, learning disabilities, difficulty with bowel and
bladder control, orthopedic problems, and hydrocephalus,
an accumulation of the fluid that is produced by the brain.
HOW COMMON IS SPINA BIFIDA AND WHAT CAUSES IT?
1 in every 2,000 babies born every year in the United States has spina
bifida. It is more common in Latina and white women. Diabetic mothers,
folate deficiency and those with seizure disorders treated with certain
medications also have a higher chance of giving birth to a baby with
spina bifida.
Spina bifida results from an error in development very early in pregnancy,
around 28 days post-conception. The spinal cord is formed from a sheet
of special cells that fold together to form a structure known as the neural
tube. Spina bifida results when the neural tube does not form correctly
and fails to close completely.
HOW IS SPINA BIFIDA DETECTED DURING PREGNANCY?
Many women first learn of their chances to have a baby with spina bifida
through a routine blood test given to them between 15 and 22 weeks of pregnancy known as the "AFP" test (also known as the "triple" or
"quad" screen). It will determine if a woman has an increased risk for a
baby with spina bifida. This test is not diagnostic, and many women who
have an abnormal result deliver perfectly healthy babies.
Ultimately the best detection of spina bifida is through an ultrasound
(sonogram) to check the baby's anatomy and development, generally
performed between 18 and 20 weeks of pregnancy. Ultrasound can
detect certain brain features characteristic of spina bifida and determine
the location of the open sac along the spinal column. Fetal MRI may be
recommended to help determine the severity of the defect.
Amniocentesis can be performed to analyze the AFP in the amniotic fluid;
elevated levels are diagnostic of spina bifida. It will also check the baby's
chromosomes. Some studies suggest that babies with spina bifida have
an increased chance to have a chromosomal abnormality.
HOW WILL MY PREGNANCY BE MANAGED NOW THAT SPINA BIFIDA HAS BEEN DETECTED?
Through the Carmen and John Train Center for Prenatal Pediatrics you will
have a thorough ultrasound to examine the anatomy and development
of the baby. If you have not had an amniocentesis, you will also be
offered that test. You may also have a fetal MRI for a detailed look at
the baby's spine and to determine how serious the spina bifida may be.
Your prenatal care will be handled by an Obstetrician with special
training and expertise in high-risk pregnancy, one of the doctors from
Maternal-Fetal Medicine (MFM). Once the diagnosis of spina bifida is
confirmed, you will have an opportunity to meet with a variety of pediatric
subspecialists who routinely see patients with this diagnosis and
work together as a team to best monitor your pregnancy and prepare
for the birth of your baby. Your Clinical Care Coordinator will make
appointments for you to meet with the following specialists: Genetics,
Pediatric Neurosurgery, Pediatric Neurology, Pediatric Urology, Pediatric
Orthopedics, and Neonatology. Each one of these specialists will work
with you and your MFM to determine the best course of action for
your delivery and for the baby's care after birth. As your delivery date
approaches, your MFM will discuss with you the delivery plan; in some
cases, a planned cesarean section may be the best option. In other
cases, elective cesarean section has not been shown to benefit the
baby or mother. You and your MFM will decide what is best for you.
WHAT TREATMENT WILL MY BABY HAVE AFTER BIRTH?
Surgery to close the spine is performed shortly after birth, generally
within the first three days, to best avoid additional nerve damage or infection.
The neurosurgeon will place the exposed spinal cord and nerves
in the appropriate place and then cover them with muscle and skin.
The accumulation of fluid on the brain (hydrocephalus) is not always
obvious before the surgery, over 90% of babies with severe spina bifida
will also need a shunt surgically placed to drain the fluid from the brain to
the abdomen and keep it from building up in the head. Since paralysis
can be a problem for babies with spina bifida, physical therapy begins
shortly after surgery to prepare the limbs for possible future walking with
braces and special crutches. While many children with spina bifida will
need to use a wheelchair to move around (about 50% by age 20), 70% of
kids with spina bifida are able to walk with crutches or braces.
WHAT IS THE LONG-TERM OUTLOOK FOR BABIES WITH SPINA BIFIDA?
The degree of handicap and other long-term considerations are largely
dependent on where along the spine the nerves were damaged, the size
of the lesion, what other types of birth defects are present, and how
aggressively the spina bifida is treated. In general, the lower the lesion
is along the spine, the better the outlook.
80% of children with spina bifida are able to control their urine output
by performing regular self-catheterization (using a tube to drain urine
from the bladder). Up to 70% of children with spina bifida have a latex
allergy. Around 10% of children with spina bifida develop curvature of
the spine (scoliosis) that requires surgical repair. In general, children with
spina bifida also have a higher rate of obesity, urinary tract disorders,
and learning disabilities. Approximately 80% of children finish high school and about 80% live at home as adults. Women with spina bifida are able
to have children, though their pregnancies are considered high-risk and
they have an increased chance of having a baby with spina bifida also.
WHAT ARE THE CHANCES I COULD HAVE ANOTHER BABY WITH SPINA BIFIDA?
Most babies with spina bifida are born in families with no other
affected members. Generally it is an isolated condition with no particular
inheritance pattern. If you have a baby with spina bifida, the chances for
another affected baby are about 1 in 40. If you are thinking of having
more children, you should take 4 milligrams of folic acid daily, beginning
at least one month before conception and throughout the first trimester
of pregnancy. This large dose of folic acid is believed to reduce the
chances for another affected pregnancy by 70%.
WHAT CAN I EXPECT FROM THE SPECIALISTS AT MORGAN STANLEY CHILDREN'S HOSPITAL?
NewYork-Presbyterian Morgan Stanley Children's Hospital/Columbia
University Medical Center is well-equipped to handle your pregnancy
and the baby's care after birth. Morgan Stanley Children's Hospital
has consistently been ranked one of the best pediatric hospitals in the
country: our pediatric neurosurgeons have extensive experience
with spina bifida, and our MFM team is among the largest and most
experienced anywhere. Our NICU is one of the most advanced in the
United States, and has been cited several times for its excellence and
dedication to patient care.
The well-being of you and your baby are extremely important to everyone
involved in your care. Together we are all dedicated to giving you the
best pregnancy and healthiest outlook for your child.
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