October is Spina Bifida Awareness Month
An estimated 166,000 people in the U.S. are currently living with Spina Bifida. More people are born with Spina Bifida than cerebral palsy, muscular dystrophy and cystic fibrosis combined, yet most people are unfamiliar with this disability. Except maybe those who saw the season seven finale of Grey’s Anatomy where Derek Shepherd and Meredith Grey attempt to adopt an African orphan, Zola, who was diagnosed with Spina Bifida.
If you are one of those individuals who have never heard of or don’t know what Spina Bifida is, then this month is a perfect opportunity to learn about the disability and support organizations that work to improve the quality of life for individuals with disabilities, especially Spina Bifida, as well as those which conduct research and provide information for prevention. Support can be given in the form of fundraising, volunteering to assist with various aspects of the organizational operation and by advocating for the rights of people with disabilities. And don’t forget the most effective strategies to raising awareness - share the information with others.
Here’s some information to get you started…
What is Spina Bifida?
Spina Bifida is the most common, permanently disabling birth defect in the United States. The neural tube defect (NTD), a group of serious conditions of the brain and spinal cord, affects one out of every 1,000 newborns in America. NTDs, like Spina Bifida, occur during the first month of pregnancy – before most women even know they are pregnant. Put simply, Spina Bifida occurs when the spinal column of the developing fetus does not close completely; the spinal cord and back bones do not form as they should. When this happens, a sac of fluid comes through an opening in the baby's back, damaging part of the spinal cord.
Click here to watch a brief video, provided by The Spina Bifida Resource Network of New Jersey and Metro New York (SBRN), a local organization dedicated to providing support and services to people with Spina Bifida. (And one of the organizations that you can support.)
Quick Facts on Spina Bifida in the United States:
- Each day, an average of 8 babies are born with Spina Bifida or a similar defect of the brain and spine. That amounts to approximately 3,000 pregnancies each year.
- There are 65 million women at risk of having a baby born with Spina Bifida.
- An estimated 166,000 people currently live with Spina Bifida.
- Hispanic mothers are 1.5-2 times more likely to give birth to a child with Spina Bifida than any other ethnic group.
Living with Spina Bifida
The effects of Spina Bifida are different for every person and depend on the location of the lesion. It is a medically complex birth defect affecting the orthopedic, urologic and central nervous systems. Conditions may include paralysis of the legs, loss of bowel and bladder control, learning disabilities, depression, latex allergy, and social and sexual issues. An estimated 90% of children with the most severe form of Spina Bifida, myelomeningocele, also have hydrocephalus (fluid on the brain) which requires surgery to insert a “shunt” that helps drain the fluid – the shunt stays in place for the lifetime of the person and often requires surgical revisions or replacements.
As recently as 35 years ago, most babies born with Spina Bifida died. It wasn't until the late 1960s, early 1970s, that babies diagnosed with Spina Bifida started surviving in numbers never before seen. Thanks to new medical treatments and technology, today, 90% of infants born with Spina Bifida live – many go on to lead successful and productive lives. People with Spina Bifida have many challenges because of their disability, but their condition does not define who they are – they go to school, have careers, play sports, get married, and have children just like people who do not have Spina Bifida.
There are individuals with Spina Bifida working and going to school right here at Kean University. Kean Xchange is working to “track” one student down for an interview… so keep your eyes peeled or you might miss him!
The exact cause of Spina Bifida is unknown. However, scientists believe a combination of genetics and environmental factors are involved. Daily consumption of the B-vitamin, folic acid, prior to and during pregnancy is shown to reduce the occurrence of Spina Bifida by up to 70%. Folic acid helps build healthy cells. It is important for all women of childbearing age to take a vitamin with folic acid every day.