Spina Bifida

Spina bifida is the most common neural tube defect. Between 1,500 and 2,000 babies born in the United States are affected each year. There are an estimated 166,000 people living with spina bifida in the U.S.

What is Spina Bifida?

Spina bifida is a birth defect that occurs when the neural tube (a layer of cells that develops into the brain and spinal cord) fails to close completely during an embryo’s first few weeks of development. As the bones of the spine and the nerves of the spinal cord continue to develop, the bones do not close completely around the nerves. Part of the spinal cord may stick out through an opening in the bones, causing permanent nerve damage.

Types of Spina Bifida

There are four types of spina bifida:

Occulta

Spina bifida occulta is the mildest and most common form of the condition. Children born with occulta have one or more malformed vertebrae. This form of spina bifida occurs in 10 to 20 percent of the general population and rarely causes disability or symptoms.

Closed Neural Tube Defects

Closed neural tube defects are a group of defects where the spinal cord shows malformations of fat, bone or meninges. In most cases, children have few or no symptoms. In some cases, the disorder can cause incomplete paralysis with urinary and bowel dysfunction.

Meningocele

Meningocele happens when spinal fluid and meninges poke through an abnormal opening in the vertebrae. The malformation does not contain neural elements and may or may not be covered by a layer of skin. Some children with meningocele have few or no symptoms. Others may experience complete paralysis with bladder and bowel dysfunction.

Myelomeningocele

Myelomeningocele is the most severe form of spina bifida. In babies with myelomeningocele, the spinal cord and surrounding structures develop outside the body and are contained in a fluid-filled sac or lesion that is visible on the outside of the baby’s back. The sac is usually located on the lower back, and babies lose function below the area where the defect is located. If the sac is located higher up on a baby’s back, more areas will lose function

Effects of Myelomeningocele

The number and severity of problems in children with myelomeningocele can vary depending on where the sac is located on the spine and how much of the spinal cord is affected. Possible health effects of myelomeningocele include:

Bowel and bladder problems, including loss of bowel or bladder control and increased risk for urinary tract infections
Loss of feeling and decreased function or paralysis in the area below the sac (some children may require a wheelchair)
Heart problems
Orthopedic issues, particularly clubfoot malformations
Hydrocephalus (increased fluid and pressure in the head)
Chiari malformation (a problem where part of the brain bulges outwards, putting pressure on the spinal cord)
Intellectual and cognitive disability
Other neurological problems

How is Spina Bifida Diagnosed?

Doctors at Riley at IU Health can diagnose spina bifida before birth through:

Since doctors know in advance that you and your baby will require specialized care during and after delivery, you will begin working with a multidisciplinary care team upon diagnosis to develop a plan for your baby’s birth and treatment.

How is Spina Bifida Treated?

You may have to deliver the baby by cesarean section (C-section) to reduce the risk of injury. In the delivery room, your baby will be placed in a special bag to lower the risk of infection. From the delivery room, your baby will be moved to the neonatal intensive care unit (NICU) for evaluation. If you deliver your baby at Riley at IU Health, he or she will receive specialized multidisciplinary treatment from the Spina Bifida Program.

A neurosurgeon will examine your baby shortly after birth to evaluate the severity of the defect and develop a treatment plan. Many babies with myelomeningocele have hydrocephalus (a build-up of fluid and pressure in the brain). If this is the case, your baby will have a special drain called a shunt placed to drain the fluid. Not all babies with myelomeningocele will need a shunt.

While in the NICU at Riley at IU Health, all babies with myelomeningocele will also have a urinary catheter inserted to help empty the bladder. Depending on the severity of the defect, this may be temporary or long-term.

A neurosurgeon will perform surgery to correct the defect within the first two days after birth. Along with surgery to repair the spinal defect, your baby may also require additional procedures later on to address orthopedic issues and problems with the bowel or bladder.

Key Points to Remember

Spina bifida is a birth defect that happens when the neural tube (a layer of cells that develops into the brain and spinal cord) fails to close completely during an embryo’s first few weeks of development.
There are four types of spina bifida: occulta, closed neural tube defects, meningocele and myelomeningocele.
Myelomeningocele is the most severe form of spina bifida.
Spina bifida can be diagnosed before birth. The multidisciplinary team of specialists at Riley at IU Health works with families to develop a plan for a baby's birth and treatment.
Babies born with spina bifida require evaluation in the NICU after birth.

Frequently Asked Questions

Learning your child will have spina bifida can seem overwhelming. Riley at IU Health has created answers to some of the Frequently Asked Questions our families ask.

Will I see my baby after he or she is born? Can I hold?

Whether you are able to hold your baby after birth depends on if the opening in your baby’s back is covered by skin or open. If it is open, special care must be done to protect the spinal cord from damage and to lower the risk of infection. Your baby will be gently cleaned, and the area of the back that is affected will be covered and protected immediately after birth. You will be able to have contact with your baby before he or she is transported to the Newborn Intensive Care Unit (NICU).

Can I breast feed my baby with spina bifida?

We do everything possible to encourage breast feeding. However, depending on the needs of your baby we may need you to provide pumped breast milk to promote healthy feeding for the baby. Our lactation consultants will work with you if you are interested.

How long will the baby be in the hospital after birth?

Every baby born with spina bifida is unique and has individual needs. But, on average babies will be in the NICU for about two weeks.

How many surgeries will my baby need?

Every baby is unique and we treat their needs as needed. Most of the early procedures are for the spina cord and brain. If the hole in the back is covered by skin, the surgery may be delayed depending on what your neurosurgery team feels is best. If open, it will be closed within the first 24-72 hours of life. About eight out of 10 babies with spina bifida will need closure of the back, and a tube (shunt) placed in the brain to drain the fluid (hydrocephalus). About 40-50% will need to have the shunt replaced during the first year of life.

If we want to have more children, what is my risk of having another baby born with spina bifida and can I do anything to lessen the risk?

Your OB/GYN and spina bifida team will recommend that you be on 4 mg of folic acid three to six months before your conceive your next child. While not perfect, it greatly reduces the risk of another baby having spina bifida.

Can I deliver my baby at my local hospital?

Babies with spina bifida should be delivered at a medical center that specializes in spina bifida so they can receive specialty care during after birth. By receiving care at a medical center specializing in spina bifida, it will be easier for the baby to have the best possible outcome. The Fetal Center at Riley at IU Health is equipped to deliver babies born with spina bifida.

Can I visit the NICU before delivery so I can better prepare?

Our NICU staff will be happy to give you and your family a tour of the NICU at Riley at IU Health so that you will see where your baby will be cared for and to learn more about the NICU. They will give you the basic information of the NICU such as:

Visiting hours and guidelines for visits

Where you can pump and store your breast milk

Supplies you should bring to the NICU and what the NICU provides

Details for parking, meals and any other questions you have

What should I pack for my baby’s NICU stay?

We will supply diapers, breast milk pump, formula (if needed), clothes and all medical supplies. You may want to bring personal items to decorate your baby’s NICU room. Please write your name on all things you bring to the NICU. The only necessary items to eventually bring for your baby are something to wear home and a car seat.

What specialists will treat my baby in the NICU?

Make sure you know who everyone is before they touch your baby. There will be many members of the care team involved in your baby's treatment. These may include:

Neonatologists
Urologists
Neurosurgeons
Developmental pediatricians
Nurse practitioners
Physical therapists
Social workers
Nurses
Medical students, residents or fellows

This can be overwhelming and confusing until you figure out who makes decisions and is the best to answer your questions.

Can you tell me more about the people caring for my baby?

As you can see it takes many care team members to help manage your baby’s spina bifida. Here are the main care team leaders:

Maternal-Fetal-Medicine doctor — this person will help manage your prenatal care, delivery of your baby and your post-partum care. You will most likely meet them during a prenatal conference.
Neonatologists — this doctor takes over the care after your baby is born and will make daily rounds to check on the overall health and progress of the baby.
Neurosurgeon — This doctor will close the hole in the back, place any shunts or tubes to drain excess pressure in the brain, and will be the person to ask about your baby’s neurological function.
Urologist — this doctor will help to assess and monitor bladder and bowel function. They will do some tests to help determine if you will need to learn how to help your baby empty their bladder after you leave the NICU.
Orthopedist — this doctor will help assess the baby for clubbed feet or other bone problems.
Developmental Pediatrician — This doctor will visit to introduce the Spina Bifida Program at Riley at IU Health and describe what clinic visits are needed after you go home from the NICU.
Nurse practitioners — this nurse has special training in neonatology and serves as an extender for the neonatologist. They will write most of the orders that control day-to-day care.
NICU Nurses — these nurses play a critical role in your baby’s day-to-day care. They will help teach you how to safely take over routine care for your baby. If necessary, they will teach you how to help your baby empty their bladder if they are not able to do so themselves. You can ask your baby’s nurse for suggestions on how to navigate the Riley at IU Health and who you should direct your questions to when you have questions about your child’s care.
Physical therapists — a therapist that will evaluate and provide range of motion exercises and stretches to help your baby move better. They will also provide guidance for early intervention services (First Steps program) after discharge.

How do I know that we are ready to go home?

We will want to make sure that the surgical site is healing well, your baby is eating and gaining weight, is able to keep their body temperature at a normal range and is healthy enough to go home. The urologist will review all of the necessary urologic tests to ensure that the baby is emptying their bladder well on their own or the parent/care giver is able to help the baby empty their bladder by a catheter. The neurosurgeon will make sure the back is healing well and that the hydrocephalus is stable (either with or without a shunt). All babies will receive a hearing test and newborn screen to rule out other medical conditions. Most babies can go home in a regular rear-facing infant car safety seat but if that is not possible, a specially designed baby car bed will be provided. At discharge, the social worker or nurse will help set up follow up appointments with the specialists and Spina Bifida Program.

What is it like to bring my baby home?

Parents spend the entire NICU stay learning how to care for their baby and looking forward to bringing their baby home. But when discharge day arrives, their excitement and relief can also be mixed with anxiety. For the first time, there won’t be round-the-clock healthcare providers to care for your baby, answer your questions and calm any fears. First-time parents realize (as all first-time parents do) that they will be solely responsible for caring for their baby, and those with other children at home worry about how they will care for the new baby along with their other children. These are all very normal fears.

The first day home will hopefully feel like a huge relief. You made it through the hardest parts of having a baby with Spina Bifida—the pregnancy and the NICU.

Coming home can also be a big adjustment. There will be people to call, appointments to make, prescriptions to fill, diapers to change and a schedule to keep. Many parents say one benefit of their baby being in the NICU is that he or she is already on a three-hour feeding schedule, which is often maintained at home. Friends and family may be eager to visit you and the baby during the first few days at home, but you should protect your time as best as possible so that you can rest and begin recovering physically and emotionally from what can be a stressful experience.

Support Services & Resources

Visit the following sites to find out more about how myelomeningocele is diagnosed and treated.

Riley at IU Health offers a broad range of supportive services to make life better for families who choose us for their children's care.

Learn More About Riley Support Services

MedlinePlus

The U.S. National Library of Medicine provides in-depth information about spina bifida.

Spina Bifida Association

The Spina Bifida Association provides in-depth information for parents of children with spina bifida.

Spina Bifida Association of Indiana

The Spina Bifida Association of Indiana supports, educates and encourages families and individuals living with spina bifida.

National Institute of Neurological Disorders and Stroke (NINDS)

The NINDS provides information about the diagnosis and treatment of the different forms of spina bifida.

Locations

In addition to our primary hospital location at the Academic Health Center in Indianapolis, IN, we have convenient locations to better serve our communities throughout the state.