Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby's brain and spinal cord and the tissues that enclose them.
Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone.
Spina bifida occurs in various forms of severity. When treatment for spina bifida is necessary, it's done through surgery, although such treatment doesn't always completely resolve the problem.
Spina bifida occurs in three forms, each varying in severity:
Spina bifida occulta
Many people who have spina bifida occulta don't even know it, unless the condition is discovered during an X-ray or other imaging test done for unrelated reasons.
In myelomeningocele, the baby's spinal canal remains open along several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back. In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed, making the baby prone to life-threatening infections.
Neurological impairment is common, including:
Myelomeningocele is a severe form of spina bifida, in which the membranes and the spinal cord protrude at birth, forming a sac on the baby's back. Exposed nerves and muscles may become infected, ...
Doctors aren't certain what causes spina bifida. As with many other problems, it appears to result from a combination of genetic and environmental risk factors, such as a family history of neural tube defects and folic acid deficiency.
At 21 days after conception (left drawing), folds of tissue on the back of a developing embryo are rapidly growing together (see lines) to form the neural tube. Just a day later (center drawing), the ...
Although doctors and researchers don't know for sure why spina bifida occurs, they have identified a few risk factors:
If you have known risk factors for spina bifida, talk with your doctor to determine if you need a larger dose or prescription dose of folic acid, even before a pregnancy begins. If you take medications, tell your doctor. Some medications can be adjusted to diminish the potential risk of spina bifida, if plans are made ahead of time.
Spina bifida may cause no symptoms or only minor physical disabilities. Frequently, it leads to severe physical and mental disabilities.
Factors that affect severity
Range of complications
Preparing for your appointment
Your health care provider will likely suspect or diagnose your baby's condition during your pregnancy. In addition to the health care provider you've selected to care for you during your pregnancy, you'll also likely consult with a multidisciplinary team of physicians, surgeons and physical therapists at a center that specializes in spina bifida treatment. Children with myelomeningocele require ongoing medical attention throughout their lives to monitor their condition and treat complications.
Because appointments can be brief, and there's often a lot of ground to cover, it's a good idea to be well prepared. Here's some information to help you get ready for your appointment, and what to expect from your health care providers if there are suspicions that your baby may have spina bifida.
What you can do
Preparing questions ahead of time will help you make the most of your time with your health care providers. List your questions from most important to least important in case time runs out. For spina bifida, some basic questions to ask include:
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask questions during your appointment.
What to expect from your doctor
Tests and diagnosis
If you're pregnant, you'll be offered prenatal screening tests to check for spina bifida and other birth defects. The tests aren't perfect. Most mothers who have positive blood tests have normal babies. Also, even if the results are negative, there's still a small chance that spina bifida is present. Talk to your doctor about prenatal testing, its risks and how you might handle the results.
The information these images provide can help establish whether there's more than one baby and can help confirm gestational age, two factors that can affect AFP levels. An advanced ultrasound can also detect signs of spina bifida, such as an open spine or particular features in your baby's brain that indicate spina bifida.
In expert hands, ultrasound today is quite effective in detecting spina bifida and assessing its severity. Ultrasound is safe for both mother and baby.
A small amount of AFP is normally found in amniotic fluid. However, when an open neural tube defect is present, the amniotic fluid contains an elevated amount of AFP because the skin surrounding the baby's spine is gone and AFP leaks into the amniotic sac. A second test can be done on the same sample to reliably confirm that a neural tube defect is present.
Discuss the risks of this test, including a slight risk of loss of the pregnancy, with your doctor.
During amniocentesis, samples of amniotic fluid are removed using a needle and then tested for genetic abnormalities in the laboratory. ...
Treatments and drugs
Spina bifida treatment depends on the severity of the condition. Spina bifida occulta often doesn't require treatment at all, but other types of spina bifida do.
Proponents of fetal surgery believe that nerve function in babies with spina bifida seems to worsen rapidly after birth, so it may be better to repair spina bifida defects while you're still pregnant and the baby is still in your uterus (in utero). So far, children who received the fetal surgery need fewer shunts, and are less likely to need crutches or other walking devices. But the operation poses risks to the mother and greatly increases the risk of premature delivery.
Discuss with your doctor whether this procedure may be right for you.
In addition, babies with myelomeningocele may need further operations for a variety of complications. Many have a tethered spinal cord — a condition in which the spinal cord is bound to the scar of the closure and is less able to properly grow in length as the child grows. This progressive "tethering" can cause loss of muscle function to the legs, bowel or bladder. Surgery can limit the degree of disability and may also restore some function.
Coping and support
News that your newborn child has a condition such as spina bifida can naturally cause you as a parent to feel grief, anger, frustration, fear and sadness. There's good reason to hope, however, because most people with spina bifida live active, productive and full lives — especially with encouragement and support from loved ones.
Even with severe spina bifida, most children can walk for at least short distances, usually with the assistance of braces, canes or crutches, although they may require wheelchairs for longer distances. Using these devices can help a child compensate for his or her condition and gain more independence.
Many children with spina bifida have normal intelligence, but they may need early educational intervention for learning problems. They may also need extra help from teachers and counselors to adapt to school. A physical disability like spina bifida can also cause emotional and social problems. Children with spina bifida need encouragement to participate in activities with their peers and to lead independent lives, within their physical limitations and capabilities. It may be helpful to remember that these children have never known what's accepted as normal function and often adapt to their condition in remarkable ways.
If your child has spina bifida, you may benefit from finding a support group of other parents who are dealing with the condition. Talking with others who understand the challenges — and rewards — of living with spina bifida can be helpful.
Folic acid, taken in supplement form at least one month before conception and during the first trimester of pregnancy, greatly reduces the risk of spina bifida and other neural tube defects.
Get folic acid first
It's also a good idea to eat a healthy diet, including foods rich in folate or enriched with folic acid. This vitamin is present naturally in many foods, including:
When higher doses are needed
Last Updated: 2011-10-04
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