Spina Bifida

Children with myelomeningocele (My-el-oh-meh-NINN-joe-seal), the most severe form of spina bifida, may have:

• Bowel and bladder problems
• Weak leg muscles or paralyzed legs
• Seizures
• Lack of skin sensation

Take your child to the doctor if they have a seizure, skin sores, a sudden change in bowel patterns, or loss of sensation.

No one knows what causes spina bifida. However, it is more common in families with neural tube problems and those who have already had a child with spina bifida.

Prenatal tests can check for spina bifida and other birth defects if you are pregnant. They include the following:

• Maternal serum alpha-fetoprotein (MSAFP) test. Your doctor draws a blood sample and has it tested for alpha-fetoprotein (AFP), a protein produced by the baby. Abnormally high levels of AFP can mean your baby has spina bifida.
• Triple or quadruple screen. Your doctor may perform the MSAFP test with two or three other blood tests. Depending on the number of tests, the combination is called a triple screen or quadruple screen (quad screen).
• Ultrasounds. If blood tests show high AFP levels, your doctor will suggest an ultrasound exam. An advanced ultrasound can detect signs of spina bifida. These include an open spine or features in your baby's brain that indicate spina bifida. An ultrasound is safe for the baby and the mother.
• Amniocentesis. If an ultrasound is normal but the blood test shows high levels of AFP, your doctor may provide amniocentesis. They use a needle to take a sample of fluid from the amniotic sac surrounding the baby. If the fluid has a high amount of AFP, your baby may have spina bifida.

Your baby will be admitted to the infant medical surgical unit or newborn intensive care unit (NICU) at Primary Children’s Hospital.

• The neurosurgeon will discuss the treatment plans for your baby.
• Your baby will have surgery. This is when the neurosurgeon closes your baby’s sac.
• After surgery, the surgeon and nurses will watch for signs of increased pressure in the brain due to hydrocephalus.

If your baby develops hydrocephalus, the neurosurgeon will talk with you about treatment options. The options may include the following:

• Shunt placement. The neurosurgeon puts a shunt (tube) in the ventricles of the brain to remove the excess fluid.
• Third ventriculostomy/choroid plexus coagulation. The surgeon makes a small opening in the bottom of the third ventricle of the brain. This lets cerebrospinal fluid leave the ventricles. It also decreases the amount of spinal fluid produced. This is a way to treat hydrocephalus without a shunt. Before the surgery, your baby will have an MRI brain scan. The neurosurgeon will look at it and see if this surgery would be right for your baby. Many babies go home from the hospital before having either procedure. Your baby will need close follow-up care with the neurosurgeon, spina bifida clinic, and her pediatrician.

Urinary Catheter and Urinary Care

Your baby will have a urinary catheter. This is a small tube put in the bladder to drain urine out of the body. It makes sure your baby’s bladder empties during surgery. The tube will stay in the bladder for several days after surgery.

Your baby will have an ultrasound to see if their bladder empties and carefully monitored.

The hospital staff will teach you how to catheterize (KATH-ah-terr-eyes) your baby. You will place a urinary catheter at home once a day until your baby is 8 weeks old. The hospital staff will order the catheters for your baby, and they will be delivered to your home.

You will give your baby a low dose of antibiotic every day to prevent urinary tract infections. The doctor will write you a prescription for this medicine.

A urologist, orthopedic surgeon, and a physical therapist will examine your baby. The nurse practitioner from the spina bifida clinic will review their recommendations with you.

Follow-up Care

Once your baby leaves the hospital, you will need to schedule periodic checkups and continued care with the spina bifida clinic. These are the same doctors and therapists you will meet in the hospital.

Babies with spina bifida should be involved in an early intervention program through your local school district. This program provides physical and occupational therapy in your home. The hospital will refer you, and the program will contact you when your baby is home.

Reduce the risk of spina bifida by taking folic acid at least a month before conception. You should continue taking folic acid through your first trimester of pregnancy as well.

If you plan to become pregnant, take at least 400 mcg of folic acid each day. Eat a healthy diet and include foods rich in folate, including broccoli, spinach, beans, egg yolks, and citrus fruits and juices.

Rice, pasta, breakfast cereals, and bread are often fortified with folic acid as well. However, a supplement is recommended. Most people don’t get enough folate from diet alone.

You may need to take a higher dose of folic acid — up to 4 mg — if you have given birth to a child with spina bifida or have spina bifida. Ask your doctor before taking any supplements.

• Intermountain Health Library

Spina bifida happens when a baby’s developing spine does not close and a sac forms on the baby’s back. The sac contains spinal fluid and the malformed spinal cord. Normally, the spinal cord sends nerves to the legs, bladder, and anus. Unfortunately, in spina bifida, some of these nerves may not connect to the legs, bladder and anus.

Spina bifida can cause several problems, including:

• Hydrocephalus (water in the brain)
• No nerves to the bladder and bowel
• Paralyzed legs
• Lack of skin sensation

Babies with spina bifida will have surgery to close the sac. They will also have urinary catheters and receive physical and occupational therapy at home.