Spina bifida is a defect in the development of the spine, resulting in a lack of skin and tissue covering the spinal cord. The neural tube usually closes by the fourth week of pregnancy, but in spina bifida, the neural tube does not close completely, leaving the baby’s delicate spine open to possible injury. A neural tube defect is among the most common and serious of birth defects, and it can occur anywhere along the backbone. The types of spina bifida include:

• Spina bifida occulta — a mild form of spina bifida in which the spinal cord and the surrounding structures remain inside the baby, but the back bones in the lower back area fail to form normally. There may be a hairy patch, dimple or birthmark over the affected area. Other times, there may be no visible abnormalities.
• Meningocele — a moderate form of spina bifida in which a fluid-filled sac is visible outside of the baby’s back. The sac does not contain the spinal cord or nerves.
• Myelomeningocele — a severe form of spina bifida in which the spinal cord and nerves develop outside of the baby’s body and are contained in a fluid-filled sac that is visible outside of the back. These children typically have weakness and loss of sensation below the defect. Problems with bowel and bladder function are also common. A majority of babies with myelomeningocele will also have hydrocephalus, a condition that causes the fluid inside of the head to build up, increasing pressure and expanding the skull bones to a larger than normal size. 

Approximately 85 percent of neural tube defects occur in the lower back area; 15 percent are located in the back of the neck or upper back areas.

Spina bifida requires a multidisciplinary team of experts. Your child’s health care team could include:

• Maternal fetal medicine specialist (before birth)
• Fetal surgeon (if prenatal surgery is selected)
• Neurosurgeon
• Orthopedist
• Urologist
• Physical Medicine and Rehabilitation
• Nurse Specialist
• Physical/occupational therapist
• Dietician
• Social worker

Spina bifida ranges in severity. Some children have mild or no symptoms. Others have lifelong disability, including inability to control their bowel or bladder, paraplegia (little or no ability to move the legs) or quadriplegia (little or no ability to move the arms and legs). The most severe form of spina bifida is myelomeningocele. For a small percentage of children, spina bifida can even be fatal.

The primary goal of managing spina bifida is to prevent infection and to preserve the spinal cord and nerves that are exposed outside of the body. Children with spina bifida, especially those with both brain and spinal cord involvement, require complex medical care and neurosurgery accompanied by careful monitoring. Because spina bifida affects the spinal cord (and oftenthe brain), complications are not uncommon. Babies and children with spina bifida are also very susceptible to breaking their bones since their bones may be weaker than normal, and they may experience learning problems.

The specialists at Children’s perform careful assessments of your child in order to determine what body systems are affected and to what degree. Most often neurosurgery is required within 24-48 after birth to cover the delicate spinal cord exposed to the outside world.

Babies born with a meningocele or a myelomeningocele usually require care in the neonatal intensive care unit (NICU) for evaluation and for surgery to close the defect, if it wasn’t closed prenatally. If you deliver at Froedtert, your baby will receive top-notch care in Children’s Wisconsin's Level IV Neonatal Intensive Care Unit, which is ranked as one of the best in the nation. We will closely monitor your baby, using ultrasounds to check his or her head, kidneys and bladder, and MRI to check the spine and brain. Your child might require a catheter to help with urine elimination or a shunt to drain excess fluid from the brain.

Historically, patients with spina bifida have been treated with surgery after birth, but it’s now possible to treat some cases while a baby is still in the womb. Studies show that prenatal surgery can provide significantly better outcomes than traditional surgery post-birth. 

Prenatal surgery is not a cure for spina bifida, and your child may still have problems with walking and urine/bowel function. Also, not every baby with spina bifida is a candidate for prenatal surgery. Learn more about fetal myelomeningocele repair.

You will be closely monitored for the rest of your pregnancy. If you undergo prenatal surgery, you will need to remain on modified bed rest after the surgery to prevent the risk of preterm delivery, and you will need to deliver your baby via a scheduled cesarean section at 37 weeks, unless you go into labor earlier. Most Milwaukee-area patients continue to receive care at the Fetal Concerns Center and then deliver at the Froedtert & the Medical College of Wisconsin Birth Center, though in some cases it’s possible for mothers to receive follow-up care and deliver at another hospital closer to home. Your baby will stay in the hospital until he or she has recovered from surgery and is strong enough to go home.

Treatment starts at birth, if not earlier. Treatment will be informed by the medical team’s assessment of your child’s condition and your input as the parent. Surgery can help manage the problems associated with spina bifida, but it cannot restore muscle function or sensation to a normal state. Surgical interventions may be needed for:

• Repair and closure of the neural tube defect
• Treatment of hydrocephalus
• Orthopedic problems (such as curvatures in the back, hip dislocations, ankle and foot deformities, and contracted muscles)
• Bowel and bladder problems (surgery may be required toreduce peeing and pooping accidents, for incontinence or constipation, or when the bladder does not empty completely)

Not all babies require surgical repair of spina bifida. Nonsurgical management of spina bifida may include:

• Rehabilitation such as physical, occupational, or speech therapy
• Positioning aids (used to help the child sit, lie or stand)
• Braces and splints (used to help bones to grow straight, promote muscle support, or help with walking)
• Medications
• Catheterization to help with urine elimination by learning how to empty your baby’s bladder by putting in a tube; and helping your baby to poop by abdominal massage, bicycling his/her legs, or putting in a suppository (medicine that helps with pooping)
• Therapeutic electrical stimulation and biofeedback to help with bladder/bowel issues

Your child’s medical team will give you detailed instructions on caring for your baby at home. Education may include the following:

• Monitoring your baby’s alertness and feeling the soft spot on his/her head to watch for hydrocephalus
• Examining the skin, especially over bony areas such as the elbows, buttocks, back of the thighs, heel and foot areas
• Promoting bowel and bladder function by learning how to empty your baby’s bladder by putting in a tube (urinary catheterization); and helping your baby to poop by abdominal massage, bicycling his/her legs, or putting in a suppository (medicine that helps with pooping)
• Ways to feed your baby and monitor your baby's nutrition
• Promoting activity and mobility
• Encouraging age-appropriate growth and development

Babies with spina bifida are at high risk for developing a latex allergy due to exposure to latex from multiple medical and surgical procedures. The medical team takes precautions to reduce the baby's exposure to products that contain latex, and your baby's health care providers can help you identify products that contain latex and also find products that are latex-free.

Yes. Our recently expanded and redesigned NICU was created to promote family bonding, with private rooms where parents can stay with their baby 24/7, and other special features for families’ comfort. Our on-call lactation specialists can help you successfully breastfeed and pump and store breast milk when direct breastfeeding isn’t an option.

After surgery, the incision on your baby’s back needs to heal before he or she can go home. Some babies may need only a brief stay in the NICU, while others may need more time in the hospital to resolve health issues. Premature babies will likely need a longer NICU stay. After discharge, your child will require ongoing monitoring by Children’s Wisconsin's multidisciplinary Spina Bifida Program or another clinic close to your home.

The full extent of this condition’s effect on your child may not be completely understood immediately after birth; it may be revealed as your child grows and develops. Since spina bifida is a lifelong condition that is not curable, management often focuses on preventing or minimizing deformities and maximizing the child's capabilities at home and in the community. Positive reinforcement, anticipatory guidance, and parental/family support will encourage your child to promote as much independence and self-confidence as possible.