Like Snowflakes, Children with Spina Bifida are All Different
Jessica Lingor describes children like her daughter Kaylie, who has spina bifida, as snowflakes.
“What we’ve learned is that kids with spina bifida are like snowflakes: everybody is different and everyone’s symptoms are different,” she told the University of Texas Health Science Center at Houston (UT Health).
Kaylie is an exuberant 5-year-old who loves her Barbie dolls, getting manicures and playing in the small toy kitchen that her parents customized.
“We try to adapt as much as we can, especially when it comes to accessibility and Kaylie’s mobility,” Jessica Lingor said, noting Kaylie crawls when she isn’t in her wheelchair.
About 1,427 babies are born with spina bifida each year in the United States, according to the Centers for Disease Control and Prevention. Spina bifida is a type of birth defect where the neural tube does not close all the way. When that occurs, the backbone protecting the spinal cord doesn’t form and close, often resulting in damage to the spinal cord and nerves.
Spina bifida often causes physical and intellectual disabilities that range from mild to severe. The severity depends on the size and location of the opening in the spine and whether part of the spinal cord and nerves are affected.
Kaylie’s case is severe. She has excess fluid in and around her brain, called hydrocephalus. She also has a misshapen skull, called craniosynostosis, as well as scoliosis and chronic hip dysplasia, making her unable to walk. She has one kidney and is prone to seizures.
Not all people born with spina bifida have the same needs, so treatment is different for each person. According to the CDC, not all causes of spina bifida are known, and the role that genetics and the environment play needs to be studied further. Spina bifida occurs during the first few weeks of pregnancy, often before a woman knows she’s pregnant.
The CDC offers the following recommendations for women to reduce the risk of spina bifida before and during pregnancy:
- Take 400 micrograms (mcg) of folic acid every day. If you have already had a pregnancy affected by spina bifida, you may need to take a higher dose of folic acid before pregnancy and during early pregnancy. Talk to your doctor to discuss what’s best for you.
- Talk to your doctor or pharmacist about any prescription and over-the-counter drugs, vitamins and dietary or herbal supplements you are taking.
- If you have a medical condition such as diabetes or obesity, be sure it is under control before you become pregnant.
- Avoid overheating your body, as might happen if you use a hot tub or sauna.
- Treat any fever you have right away with acetaminophen.
Within hours of Kaylie’s birth, UT pediatric neurosurgeon Dr. Manish Shah repaired the exposed part of her spinal cord. Pediatric plastic surgeon Dr. Matthew Greives helped him close the muscle and the skin, and complete the procedure.
Shortly after, Shah placed a small, hollow tube called a shunt into Kaylie’s brain to help drain the excess fluid. During the procedure, they also remodeled the bones of Kaylie’s skull to create a traditional head shape, giving her brain more room to grow.
Casts of both of Kaylie’s feet have been made in preparation to get them into normal positions through multiple surgeries and braces so that she can fit into shoes. One of her feet is a club foot and the other is affected by congenital vertical talus, a rare disorder that presents itself as an extreme case of flatfoot.
“The goal with any of our surgeries for patients with multiple medical problems tied to spina bifida is to focus on improving their quality of life,” Greives said.
What Causes Spina Bifida?
Spina bifida can be caused by a combination of genetic, nutritional, and environmental risk factors, and often occurs within the first few weeks of pregnancy. This birth defect can also be attributed to a parent’s exposure to toxic chemicals in the environment or workplace, either before or during pregnancy. There are many workplaces and environmental sites in which hazardous chemicals are used, so toxic exposure is potentially very common in the US. In manufacturing plants, fields, farms, energy plants, and job sites across the country, workers are exposed to toxins daily that put them at risk of having a child with spina bifida and other birth defects.
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