12.3. Spina Bifida-A Personal Perspective
By Kelly Rouba
Jennifer Biggers (left) and Amy Saffell both have the same type of spina bifida, but every person's condition is unique.
I first met Karen Palazzini in freshman year of high school. Although one might guess that our similar situations bonded us together, having a disability was something we rarely discussed. Instead, it was the countless chocolate desserts and sappy chick flicks-not her struggle with spina bifida or my battle with arthritis- that paved the way to friendship.
So, it wasn't until I took on this assignment that I finally asked Karen to share with me exactly what it means to have spina bifida. Now, 13 years later, I finally have the answer.
Spina Bifida-the Basics
To put it simply, "Spina bifida is a birth defect," Karen told me during a recent girls' night out. From there, things get a bit more complicated.
Spina bifida takes three forms-occulta, meningocele, and myelomeningocele. In each case, "the spinal cord in the fetus develops within the first 28 days of pregnancy," says Amanda Darnley, director of Communications and Marketing for the Spina Bifida Association, "Spina bifida occurs when the spine fails to close."
Occulta, the least severe of the forms, is the result of a small defect or gap in several vertebrae. Occulta is often referred to as the "hidden spina bifida" because motor or sensory impairments are not evident at birth. In most cases, there are no symptoms, however neurologic deterioration can develop later in life.
The second type, meningocele, means that the meninges (or membranes that cover the central nervous system) are protruding from a hole in the spinal cord. Although the nerves usually aren't damaged, individuals may suffer minor health problems.
Myelomeningocele is the most severe of the three and means that individuals have a hole (or lesion) in their spinal cord where the nerves don't connect. If the lesion is lower on the spinal cord, it usually means the person will have a less severe case of spina bifida.
"[Myelomeningocele] usually results in some sort of paralysis in the legs and it is common to see some sort of bowel and bladder control difficulties," Darnley said, adding, "With the bladder issues, people often end up having to catheterize, which can result in urinary tract infections."
Additionally, up to 90% of children who have myelomeningocele will experience hydrocephalus, which occurs when cerebrospinal fl uid builds up inside the head. "So [doctors] insert a shunt and it drains the fluid off the brain. The shunt is something [patients] will monitor their entire lives," Darnley said.
Amy Saffell, another friend of mine who was also born with spina bifida and relies on a wheelchair for mobility, pointed out that having spina bifida is not like having a typical spinal cord injury.
"Although the paralysis may be the same," Amy told me, "one big difference is that our body grows up knowing how to compensate. Many people with spinal cord injuries have bad muscle spasms and take lots of medicine to regulate their body since it has to operate totally differently from when they were able bodied. With spina bifida, we don't really have to do that because our body is totally used to being paralyzed; it's always been that way."
<strong>The Personal Side of Spina Bifida </strong>
"Spina bifida occurs in seven out of every 10,000 live births in the United States. And no two cases of spina bifida are ever the same. Every case is unique," Darnley says.
Karen has myelomeningocele, but her situation is not quite as severe as Amy's or another friend Jennifer Biggers. Now 23 years old, Jennifer has relied on a wheelchair for much of her life.
"I got my first wheelchair when I was four; it was right before preschool," Jennifer said. "Until then, I was carried everywhere. I also used braces when I was younger, mainly for exercise, but it was tiring because I don't have any muscle strength to hold me up."
Studies suggest a correlation between folic acid intake in a mother's diet and the incidence of spina bifida in her offspring. Doctors advise women of child-bearing age to eat diets rich in folic acid.
"Most children with spina bifida will have multiple surgeries throughout their childhood," Darnley says. "There are lots of different surgeries that are done."
Over the years, Karen has had about 10 operations. "My first surgery was when I was two months old and doctors basically operated to stabilize my spinal cord," she said. "Another time, I had a pin put in my hip to try to stabilize that joint. Because of the spina bifida, there was nerve damage in my right leg and the joints and bones didn't form right."
Jennifer's first surgery took place soon after she was born. "I had a hole in my back so I had to get that sewn up," she said. Later on, doctors "put a shunt in [my head], but it never worked and I never needed it. I guess it was a precautionary thing. It ended up swelling, so they took it out. I also have rods in my back now because I had scoliosis when I was younger."
Is There a Cure?
To date, the exact cause of spina bifida is still unknown. "Many things can affect a baby, from family genes to things a woman may have come in contact with during pregnancy," Darnley said.
There is also no cure for spina bifida. However, doctors are now experimenting with an in-utero surgery that might help babies who have the defect, Karen said. In the study, doctors are looking at the benefits of closing the lesion before the baby is born. Typically, doctors will operate after the baby is born.
It has also been found that the B-vitamin folic acid can be used as a preventative measure against spina bifida. According to Darnley, there was a signifi cant decrease in the number of cases of spina bifida when manufacturers started fortifying cereals and fl our by putting folic acid in them. "But, we still see a high level of occurrence (of spina bifida) in the Hispanic population," she noted.
"A lot of doctors say spina bifida results because of the lack of folic acid in the mother, but honestly it could just happen. My mother was healthy and taking everything she was supposed to," Jennifer added.
But, Darnley still advises, "Anyone who is of a child-bearing age should be taking a daily multivitamin. A normal woman should take 400 micrograms of folic acid each day, and those who have had a previously affected pregnancy, a doctor will put them on a prescription of a higher dose."