By Kathy Hubbard
“We were told he would never walk; he would never go to a ‘real’ school; he wouldn’t be a normal kid.” These are the words a woman named Erin wrote on the Centers for Disease Control and Prevention’s website regarding birth defects. “They told us that as a result of having spina bifida, his life would be hard, and he would likely suffer because of it.”
Erin was pregnant with her son, Henry, when she heard those not-so-cheerful remarks from her physician. But, modern medicine and a good team of professionals with expertise in spina bifida altered the course.
“Henry has proven doctors wrong time and again,” she wrote. He has shown us with unwavering spirit and determination that if you want something, you go get it, and you use what you have to get there.”
Spina bifida means “split spine.” It occurs in the womb when the fetus’ spine and spinal column don’t close properly. Roughly eight babies a day are born in the U.S. with spina bifida or a similar congenital disability.
“It’s a type of neural tube defect,” Mayo Clinic explains. “The neural tube is the structure in a developing embryo that eventually becomes the baby’s brain, spinal cord, and the tissues that enclose them.
Typically, the neural tube forms early in pregnancy, and it closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube doesn’t close or develop properly, causing defects in the spinal cord and the bones of the spine.”
The three most common types of spina bifida are spina bifida occulta, meningocele, and myelomeningocele (my-low-ma-nin-jo-seal, easy for you to say). Occulta, which means “hidden,” is the mildest. Many people with occulta don’t know they have it until they have reason to have a spinal imaging test.
“With meningocele, a sac of fluid comes through an opening in the baby’s back. But, the spinal cord is not in this sac. It is usually little or no nerve damage,” CDC says. Treatment is typically surgery, and most children grow up fine, although they should be monitored for any problems.
Most of the time, when we talk about spina bifida, we’re talking about myelomeningocele, which is when the sac of fluid-containing part of the spinal cord and nerves come through the baby’s back, causing damage, sometimes severe. This is the type that causes disabilities and life-threatening infections.
There are screening tests to check for spina bifida and other congenital disabilities. A simple blood test measures how much alpha-fetoprotein (AFP) has passed into the mother’s bloodstream from the baby. A high level of AFP might indicate spina bifida. Spina bifida can also be detected with an ultrasound and in an amniocentesis.
Mayo says that doctors aren’t sure what causes spina bifida, but they think it’s a combination of genetic, nutritional, and environmental risk factors. It’s more common among whites and Hispanics, and females are affected more often than males.
Identified risks include folate deficiency, a family history of neural tube defects, some medications (anti-seizure particularly), diabetes, obesity, and increased body temperature.
Let’s start with folate (folic acid in its synthetic form). “Folate, the natural form of vitamin B-9, is important to the development of a healthy baby,” Mayo says. The Spina Bifida Association says that because half of the pregnancies are unplanned, women of childbearing age need to take a daily vitamin that contains 400 mcg (0.4 mg) of folic acid daily.
But, you don’t want to rely on vitamins alone. To have a healthy baby, it’s essential to eat a healthy diet. If you have diabetes or are obese, you should talk to your healthcare provider before becoming pregnant.
As for avoiding increased body temperature, some evidence has shown that hyperthermia in the early weeks of pregnancy may increase the risk of spina bifida. “Elevating your core body temperature, due to fever or using a sauna or hot tub, has been associated with a possible slightly increased risk of spina bifida,” Mayo says.
Henry has his challenges, don’t get me wrong, but his mother says that he embraces life despite the surgeries and seemingly endless tests. I, for one, wish him all the best.
Kathy Hubbard is a member of Bonner General Health Foundation Advisory Council. She can be reached at email@example.com.