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% of neural tube defects occur in the lower back area and 15% are located in the back of the neck or upper back areas.

Illustration of a meningomyelocele or myelomeningocele which contains cerebral spinal fluid, meninges and spinal cord.

Early detection is important because it prepares your family for the challenges that come with welcoming a child with spina bifida. Your doctors may use the following prenatal tests to diagnose this condition:

• Blood tests: The American College of Obstetrics and Gynecology recommends a blood test for all pregnant women. This blood test, usually done between the 15th-20th weeks of pregnancy, measures alpha-fetoprotein (AFP) levels and other biochemical markers in the mother’s blood to determine whether her pregnancy is at increased risk for an ONTD. AFP is normally produced by the fetus and crosses the placenta into the mother's blood, and babies with an ONTD tend to have elevated levels of this protein. Although this test cannot tell for certain whether a fetus has an ONTD, it indicates whether further testing is necessary.
• Prenatal ultrasound (also called sonography): A diagnostic imaging technique that uses high-frequency sound waves and a computer to create images of blood vessels, tissues and organs. Ultrasounds are used to view internal organs as they function and to assess blood flow through various vessels. Prenatal ultrasound may be able to detect an ONTD in the majority of cases.
• Amniocentesis: A procedure that involves inserting a long, thin needle through the mother’s abdomen into the amniotic sac to withdraw a small sample of the amniotic fluid for examination. The fluid is then tested to determine the presence or absence of an open neural tube defect. Small or closed defects may not be picked up by this test.

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 their 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.

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 they have 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 their 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 their 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 their 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.

After surgery, the incision on your baby’s back needs to heal before they 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.

Once a child with an open neural tube defect has been born in the family, the chance for an ONTD to occur again is increased to 3-5%. The type of neural tube defect can differ the second time. Your doctor will likely prescribe high doses of folic acid (preferably before you conceive) to reduce the odds of your baby developing spina bifida. If you underwent prenatal repair, the surgical scar on your uterus puts you at increased risk of uterine rupture during childbirth. You will need to wait two years between pregnancies and deliver all future babies via planned cesarean section no later than 37 weeks.

Clinical Care Partner with the National Spina Bifida Association (SBA)

The Spina Bifida program at Children's Wisconsin is designated as a clinical care partner in collaboration with the national Spina Bifida Association (SBA). This designation from SBA supports the excellent care that children with spina bifida receive at Children's. To be designated as a partner, the program must achieve 10 standards of care which use best practices to promote the best outcomes for people with Spina Bifida. The standards address such issues as:

• Ensuring the use of the guidelines for care of children with Spina Bifida
• Coordination of care through a multidisciplinary team
• A partnership with a prenatal evaluation center
• A transition program to continue to support the health of adults with Spina Bifida.

Children's Wisconsin joins only 30 clinics worldwide who have this designation and are able to collaborate with other providers and SBA, and to share ideas with a national network of providers that have also been recognized as SBA clinic care partners.

The first prenatal spina bifida surgery in Wisconsin was completed at Children's Wisconsin in 2014. Joe and Melanie Donnerbauer of Little Chute, Wis. discovered their son, Miles, had a severe form of spina bifida in Melanie's 18th week of pregnancy. Spina bifida is a defect in the closure of the neural tube, often leading to paralysis. The Donnerbauers chose to undergo in utero corrective surgery to repair the spinal defect, which was the first procedure of its kind in the state of Wisconsin. Miles was born six weeks after the surgery.

Milwaukee's WISN 12 News covered the story on Nov. 1. As of when the story aired, Miles weighed almost seven pounds and had movement in his legs. Right now, he seems to be on track to a healthy life, and there is a very good chance he will be able to walk.

• Watch the news segment covering their story on WISN.com