Quinnipiac junior Emily Pember thinks spina bifida is a big deal.
It could be because the disability affects one in every 1,000 newborns in the United States. It could also be the fact that it is the most frequently occurring, permanently disabling birth defect. Or it could be because she endures the disorder.
Pember, a social services major, has dealt with spina bifida since birth and has been confined to a wheelchair all her life because of the disorder.
“The biggest mistake people can make is to not ask questions about what they don’t understand,” Pember said. “People end up making assumptions about disabilities. All they need to do is ask about what they don’t get.”
According to the Spina Bifida Association of America, the disability is one of the most common and severe of all birth defects.
The disorder results from the inability of a newborn’s spine to close correctly and usually occurs during the first month of pregnancy.
In the most devastating cases, the spinal cord can protrude through the back and may be covered only by a thin layer of skin or membrane.
The procedure to correct spina bifida in a newborn is usually performed within 24 hours of a birth. This minimizes the risk of infections and aims to preserve what is left of a functioning spinal cord in the child, the association said.
Because paralysis can result from the extensive damage dealt to the spinal cord, those with the defect often need extensive medical care, and many times, surgery.
Spina bifida can also cause hydrocephalus, which leads to the accumulation of fluid in the brain. Hydrocephalus is often combated with a surgical procedure called “shunting.”
A tube, or “shunt,” is inserted into the body to aid in redirecting cerebrospinal fluid from a ventricle in the brain to the abdomen.
Today, as a result of more advanced and sophisticated medical techniques, most children born with spina bifida are able to live well into adulthood.
Although Spina Bifida Awareness Month is observed in September, Pember wants to start creating awareness of the disability around campus in the near future. She plans to distribute yellow ribbons to students in support of educating and learning about the disorder.
Pember also envisions working in conjunction with friends and campus community service organizations to distribute information about spina bifida
“The goal I want to achieve is just making people more aware [about spina bifida],” Pember said.