Photo source: pedclerk.bsd.uchicago.edu
Spina bifida means open spine. The spine (backbone) protects the spinal cord, a bundle of nerves that runs down the middle of your back. The spinal cord carries signals back and forth between your body and your brain.
Spina bifida happens when the bones in the spine don’t form correctly, or when the spinal cord doesn’t form correctly, leaving a gap or opening. Spina bifida can happen anywhere along the spine.
Spina bifida is the most common kind of neural tube defects (also called NTD). NTDs are birth defects of the brain and spinal cord. Birth defects are health conditions that are present at birth. Birth defects change the shape or function of one or more parts of the body. They can cause problems in overall health, in how the body develops or in how the body works.
A baby’s neural tube normally develops into the brain and spinal cord. It starts out as a tiny, flat ribbon that turns into a tube by the end of the first month of pregnancy. NTDs happen if the tube doesn’t close completely.
About 1,500 to 2,000 babies are born with spina bifida each year in the United States.
How can spina bifida affect your baby?
Spina bifida can affect how your baby’s brain, spine, spinal cord and meninges develop. Meninges are the tissues that cover and protect the brain and the spinal cord.
The four types of spina bifida are:
- Spina bifida occulta (also called hidden spina bifida). This is the mildest form and usually doesn’t cause health problems. In this condition, the gap in the spine is small. The spinal cord and nerves stay in place and usually aren’t damaged. A dimple, hairy patch, dark spot or swelling may appear on the skin over the gap. If you see something like this at the bottom of your baby’s back, tell your baby’s health care provider.
- Closed neural tube defect. In this condition, the fat, bone or meninges around the spinal cord don’t form correctly. This sometimes damages the nerves in the spinal cord. This condition often causes no symptoms, but some babies may have problems controlling their bladder and bowels (going to the bathroom).
- Meningocele. This is the rarest form. In this condition, the meninges push out through the gap in the spine. This creates a sac filled with fluid (called a meningocele) on the baby’s back. There’s usually little or no nerve damage, but some babies may have problems controlling their bladder and bowels. Surgery can remove the meningocele.
- Myelomeningocele (also called open spina bifida). This is the most severe and the most common form of spina bifida. In this condition, part of the spinal cord pushes out with the meninges through the gap in the spine to form a sac on the baby’s back. The spinal cord and nearby nerves are damaged. This condition can cause paralysis (when you can’t feel or move one or more parts of your body) and life-threatening infections. Babies with this condition need surgery before birth or within the first few days of life. During surgery, a surgeon tucks the spinal cord and nerves back into the spine and covers them with muscle and skin. This can help prevent new nerve damage and infection. But the surgery can’t undo any damage that’s already happened. Even with surgery, babies with this condition have lasting disabilities, like problems walking and going to the bathroom.
What health problems can spina bifida cause and how are they treated?
Spina bifida can cause a number of health problems, including:
Chiari II malformation. This condition happens when the lower part of the brain sits in the upper part of the neck. Some babies with this condition have hydrocephalus (fluid buildup in the brain), weakness in the upper body (like in the arms and hands) and/or breathing or swallowing problems. Babies with this condition usually have myelomeningocele.
Hydrocephalus. Extra fluid can cause the head to swell and put pressure on the brain. Hydrocephalus can cause intellectual and developmental disabilities. These are problems with how the brain works that can cause a person to have trouble or delays in physical development, learning, communicating, taking care of himself or getting along with others. In some cases, a surgeon needs to drain the extra fluid from a baby’s brain.
Latex allergy. Many babies with spina bifida are allergic to latex (natural rubber). If your baby is allergic to latex, keep him away from items made of latex like rubber nipples and pacifiers.
Learning disabilities. Children with spina bifida sometimes have problems with language, reading, math and paying attention.
Meningitis. This is an infection of the meninges that causes swelling in the brain and spinal cord. Meningitis can damage the brain and can be life-threatening. If your baby has meningitis, she may need antibiotics (medicine that kills infections caused by bacteria).
Paralysis. People with spina bifida higher on the spine may have paralyzed legs or feet and need to use wheelchairs. Those with spina bifida lower on the spine (near the hips) may have more use of their legs. They may be able to walk on their own or use crutches, braces or walkers to help them walk. Some babies can start exercises for the legs and feet at an early age to help them walk with braces or crutches when they get older.
Skin problems. People with spina bifida can develop sores, calluses, blisters and burns on their feet, ankles and hips. But they may not know they have these problems because they may not be able to feel certain parts of their body. Your baby’s provider can recommend ways to help prevent skin problems.
Tethered spinal cord. This condition happens when the spinal cord is held tightly in place, causing the cord to stretch as your baby grows. The stretching can cause nerve damage in the spine. Babies with tethered spinal cord may have problems like back pain and a curved spine (also called scoliosis). Tethered spinal cord can be treated with surgery. This condition affects babies with myelomeningocele, meningocele and spina bifida occulta.
Urinary tract infections (also called UTIs). The urinary tract is the system of organs (including the kidneys and bladder) that helps your body get rid of waste and extra fluids in the urine. Babies with spina bifida often can’t control when they go to the bathroom because the nerves that help a baby’s bladder and bowels work are damaged. If your baby has problems emptying the bladder completely, this can cause UTIs and kidney problems. Your baby’s health care provider can teach you how to use a plastic tube called a catheter to empty your baby’s bladder.
Other conditions. Some people with spina bifida have problems with:
- Digestion, the process of how your body breaks down food after you eat it
- Having sex
- Social and emotional conditions, including depression
Does your baby need a team of providers to treat spina bifida?
Yes. Depending on your baby’s health problems, his team may include:
- Pediatrician. This is a doctor who has special training to take care of babies and children.\
- Neurologist. This is a doctor who treats problems of the nervous system, including the brain, spinal cord and nerves.
- Urologist. This is a doctor who treats problems of the urinary tract (kidneys, bladder, ureters and urethra).
- Orthopedist. This is a doctor who treats injuries and diseases of the bones, joints, ligaments, tendons, muscles and nerves.
- Psychologist. This is a person trained to help people with social and mental health problems.
- Psychiatrist. This is a doctor who treats mental illness.
- Developmental therapist. This is a person trained to help with behavior and social skills.
- Occupational therapist. This is a person trained to help people do everyday activities, such as holding and letting go of things, getting dressed and feeding themselves.
- Physical therapist. This is a person who creates exercise programs to help improve strength and movement.
What causes spina bifida?
We’re not sure exactly what causes spina bifida, but these things may play a role:
Ethnic group. This is a group of people, often from the same country or region, who share language or culture. Spina bifida and other NTDs are more common in Caucasians and Hispanics and less common among Ashkenazi Jews, most Asian groups and African- Americans.
Folic acid is a B vitamin that every cell in your body needs for normal growth and development. Taking 400 micrograms of folic acid every day before and during early pregnancy can help reduce your baby’s risk for NTDs. You need folic acid when you’re pregnant, too. During pregnancy, take a prenatal vitamin each day that has 600 micrograms of folic acid in it.
If you have spina bifida or if you’ve had a baby or a pregnancy with an NTD, talk to your health care provider before getting pregnant again about how much folic acid you should take.
Genes are the part of your body’s cells that store instructions for the way your body grows and works. Genes are passed from parents to children. Sometimes changes in genes can cause conditions like spina bifida. Parents can pass these gene changes to their children. You may be more likely than others to have a baby with spina bifida if:
- You or your partner has spina bifida. When one parent has spina bifida, there’s a 1 in 25 (4 percent) chance of passing spina bifida to your baby.
- You already have a child with spina bifida. In this case, there’s a 1 in 25 (4 percent) chance of having another baby with spina bifida.
In these cases, you may want to see a genetic counselor. This is a person who is trained to help you understand how genes, birth defects and other medical conditions run in families, and how they can affect your health and your baby’s health. In most cases, spina bifida happens without any family history of the condition. This means no one in your family or your partner’s family has spina bifida.
Health conditions. Health conditions and medicines you take during pregnancy may play a role in causing spina bifida:
- Get to a healthy weight before pregnancy.
- Get treatment for health conditions, like diabetes.
- Tell your provider about any medicines and supplements you take, including prescription and over-the-counter medicines, supplements and herbal products. Your provider may tell you to stop taking a medicine or switch you to one that’s safer during pregnancy. For example, some anti-seizure medicines may increase your risk of having a baby with an NTD
Getting overheated during pregnancy. This may increase your chances of having a baby with spina bifida. Don’t use hot tubs or saunas when you’re pregnant. If you have a fever, take acetaminophen right away and call your provider.
How do you know if your baby has spina bifida?
Spina bifida can be diagnosed during pregnancy or after your baby is born. Spina bifida occulta may not be diagnosed until later in life.
You may have prenatal tests (medical tests you get during pregnancy) to check your baby for spina bifida and other birth defects. These tests include:
- Maternal blood screening. This test measures substances in your blood. If you have high levels of a substance called alpha-fetoprotein (also called AFP), your baby may have spina bifida. The test is done at 15 to 20 weeks of pregnancy.
- Amniocentesis (also called amnio). This test takes some amniotic fluid from around your baby in the uterus (womb). The test checks the fluid for birth defects and genetic conditions. You can get this test at 15 to 20 weeks of pregnancy
- Ultrasound .This test uses sound waves and a computer screen to show a picture of your baby inside the womb. Providers may see spina bifida with this test.
After your baby is born
In some cases, providers diagnose a baby’s spina bifida after birth. A hairy patch of skin or a dimple on your baby’s back may be the first sign of spina bifida. If your provider thinks your baby has spina bifida, she may use one of these tests to get a clearer view of your baby’s spine:
- Computed tomography (also called CT or CAT scan). CT scans use special X-ray equipment and powerful computers to make pictures of the inside of your body.
- Magnetic resonance imaging (also called MRI). MRI is a medical test that makes a detailed picture of the inside of your body.
- X-ray. X-rays use radiation to make a picture of your baby’s body on film.