Spina bifida

If your baby is diagnosed with a form of spina bifida, such as myelomeningocele, the experienced specialists at our Center for Fetal Care can help. Our fetal surgeons and doctors provide comprehensive evaluation and diagnosis of spina bifida to carefully plan your baby’s care, using the most advanced treatments available.

Our highly skilled fetal surgeons have extensive expertise performing in utero surgery, which means we operate on you and your baby during pregnancy to repair spina bifida. We were the first in the Chicago area to provide in utero therapy for fetal conditions. Our neonatal and pediatric neurosurgeons are skilled in the latest surgical techniques to help minimize the effects of spina bifida. Working with neonatal and pediatric experts across Advocate Children’s Hospital, we coordinate the services your baby needs from multiple fields of medicine.

Learn more about what to expect when you come to us for your baby’s care.

What is spina bifida?

Spina bifida is a congenital (present at birth) condition that occurs when a baby’s neurologic system (brain and spinal cord) do not develop properly. During early pregnancy, a baby’s brain and spinal cord form from specialized cells known as the neural tube. If the neural tube does not close completely, the spinal bones (vertebrae) don’t completely surround and protect the spinal cord. The spinal cord is exposed through an opening in the spine, which can cause permanent nerve damage.

Types of spina bifida

Spina bifida ranges from mild to severe, depending on the size and location. The most commonly known types of spina bifida are:

• Myelomeningocele (MMC): In this most severe form, the spinal opening typically extends along several vertebrae, and it most commonly affects the lower or middle back. An open sac comes through the spinal defect opening, and contains part of the spinal cord, cerebrospinal fluid (CSF), and meninges (the protective membranes that cover the brain and spinal cord). Myelomeningocele can cause serious complications depending on where the opening is along the spine. These problems can be physical, such as leg weakness or paralysis, or cognitive, such as learning, social and emotional issues.
• Meningocele: With this type of spina bifida, the sac that comes through the spinal opening contains CSF and meninges, but the spinal cord remains in place inside the spine. With a meningocele, the sac is usually covered by skin. Typically, children are neurologically normal and do not require surgical repair.
• Occulta: Spina bifida occulta (which means hidden) is the mildest type, involving a small gap in the spine. It usually doesn’t cause neurological symptoms, so many people with spina bifida occulta might not even know that they have it.

What causes spina bifida?

The exact causes of spina bifida are unknown, and scientists believe that a combination of environmental and genetic factors may be involved. Research suggests adequate folic acid intake minimizes risk of spina bifida. Folic acid (vitamin B9, also called folate) is important for your baby’s brain and spinal cord development.

Folic acid occurs naturally in many foods, such as leafy green vegetables, eggs and citrus fruits. Many multivitamins and most prenatal vitamins commonly contain folic acid.

Spina bifida signs and symptoms

Spina bifida does not cause signs or symptoms that women experience during pregnancy. Our doctors can detect signs of spina bifida in a baby before birth, often as early as 14 weeks, using 3D ultrasound.

Signs that can appear during ultrasounds of babies in utero include:

• Fluid-filled sac protruding from the middle or lower back
• Opening along one or more vertebrae

The effects of spina bifida vary, depending on factors such as:

• How large the spinal opening is
• Where the opening is along the spine
• Whether it is covered with skin
• Which spinal nerves are affected

The signs and symptoms that appear at birth or later in childhood include:

• A patch of hair, birthmark or dimple at the site of the opening (more commonly with spina bifida occulta)
• Developmental difficulties such as learning disabilities, muscle weakness, and bone and joint problems
• Fluid buildup in the brain (hydrocephalus)
• Loss of bladder or bowel control (incontinence)
• Loss of sensation in parts of the body below the spinal opening
• Partial or total paralysis in the legs

Spina bifida diagnosis

If your doctor sees signs of spina bifida in a routine ultrasound, you will then have more detailed imaging to confirm a diagnosis. The imaging we may use includes:

• Targeted, high-resolution ultrasound
• On-site ultrafast fetal magnetic resonance imaging (MRI)

You may need one or more other tests during pregnancy:

• Maternal serum alpha fetoprotein (MSAFP) screening: We take a small sample of your blood to measure the level of alpha fetoprotein, a protein that your baby produces. It’s normal from your blood to contain some AFP, but abnormally high levels of AFP could be a sign of spina bifida. MSAFP screening is part of your routine prenatal testing.
• Amniocentesis: We use a needle to take a small sample of fluid from the amniotic sac (protective membrane surrounding your baby). High levels of AFP in the amniotic fluid can also mean spina bifida.
• High-resolution fetal echocardiogram: A higher risk of structural heart problems can apply to babies with spina bifida. Ultrasound echocardiogram during the pregnancy provides a noninvasive way to take images of your baby’s heart to see how well it’s working and developing.
• Genetics evaluation: We refer you to our genetics program for a consultation and evaluation. Our genetic specialists provide counseling to help you decide if testing is right for your family.

Spina bifida occulta can go unnoticed until babies are born or grow older and develop symptoms. We use advanced diagnostic imaging techniques, including MRI or computed tomography (CT), to evaluate your baby’s brain and spine after birth as well. Find out more about the imaging methods we use to diagnose fetal conditions.

Spina bifida treatment

At the Center for Fetal Care, the surgical treatment options for spina bifida include fetal in utero repair of the MMC or postnatal spina bifida repair. When recommending treatment options, our team focuses on the health of both you and your baby. We help you understand your baby’s condition so that you can make decisions that match your preferences and goals for your baby’s care.

Open fetal surgery for spina bifida/MMC

The Center for Fetal Care is one of only a few centers in the country with fetal surgeons and pediatric neurosurgeons who have the surgical expertise to provide in utero spina bifida repair surgery. Repairing the spinal opening before your baby is born helps prevent further nerve damage and can minimize the risk of developing hydrocephalus, or other complications later in life.

In utero fetal surgery for MMC involves an incision in the mother’s abdomen (belly) and another in the uterus to reach the baby, using ultrasound for guidance. The pediatric neurosurgeon then removes the sac surrounding the MMC and places the spinal cord back into the spinal column. To protect the spinal cord from exposure to the amniotic fluid, the surgeon closes the tissue and skin over the area.

Our team will discuss your candidacy for this type of treatment as there are certain criteria that must be met. We will also provide information as to what you can expect after the surgery and how treatment impacts remainder of your pregnancy. You'll stay in the hospital for three to five days followed by at home bed rest, monitoring and outpatient appointments, and delivery by C-section. Additional considerations on what to expect will be reviewed so you can feel assured moving forward with this treatment option.

Treatment after birth for spina bifida

For delivering your baby, we discuss vaginal delivery and cesarean section, helping you decide based on you and your baby’s specific health needs. Our neonatologists (specialists in newborn care) will be on hand to provide immediate care for your baby at birth. Our nationally recognized NICUs are located in the same hospital buildings as the maternity/labor units at our Oak Lawn and Park Ridge hospitals.

If your baby’s MMC is repaired prenatally, your baby will receive care in our Level III Neonatal Intensive Care Unit (NICU) after birth. Our NICU team and the pediatric neurosurgeons will monitor your baby for development of hydrocephalus and will assess and treat your baby’s additional needs.

If your baby’s spina bifida will be repaired after birth, your baby will receive care in our Level III Neonatal Intensive Care Unit (NICU). Our neonatal neurosurgeons will perform surgery to repair the spinal opening when your baby is one to two days old.

Learn more about our treatments and services for your developing baby, including fetal surgery.

Follow-up care for spina bifida

At Advocate Children’s Hospital, we provide ongoing, comprehensive care for children who have spina bifida. Our neonatal and pediatric specialists bring together expertise from multiple fields of medicine for children from infants through young adults. Our Spina Bifida Clinic includes specialty care in:

• Pediatric neurosurgery
• Pediatric urology
• Physical and occupational therapy
• Social work