The Colorado Spina Bifida Association (CSBA) was founded in 1971 and incorporated in 1986. A short time later, one of our members helped to establish the Spina Bifida Association of America (SBAA), a national organization located in Washington, D.C.
In 2007, CSBA changed its name to Spina Bifida Association of Colorado (SBACO) in alignment with SBAA and their many affiliated local chapters. Each chapter is responsible for its own funding. Both the IRS and the State of Colorado recognize the SBAC as a 501c3 non-profit organization.
The SBACO was primarily formed as a support group for Colorado parents, family, and friends of children with Spina Bifida. Over the years, our organization has grown and expanded to include many adults with Spina Bifida as well. Assistance and information is also provided to people from Kansas, Nebraska, and Wyoming when they come to The Children’s Hospital of Denver for clinics and treatment.
Our newsletter, which is mailed to over three hundred individuals, joins us in a spirit of togetherness and friendship, as we have all had our lives touched, expanded and enriched by a friend or family member with Spina Bifida.
Despite its frequent occurrence, many people have never heard of Spina Bifida. But more children are affected by this condition than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined. Approximately 7 out of every 10,000 newborns in the United States are affected when the vertebrae or individual bones that make up the backbone and enclose the spinal cord do not close as usual. Instead, one or more of these vertebrae remain open, leaving that section of the spine exposed and unprotected. A bulge called a myelomeningocele can form in this open area which causes damage to these vital spinal nerves. Although the opening can occur at any level along the spine, it usually occurs in the lower spinal region. The damaged nerves lead to varying degrees of paralysis of the lower limbs, and bowel and bladder complications. Most children and adults with Spina Bifida use braces, crutches, or wheelchairs for mobility.
Spina Bifida is also almost always accompanied by hydrocephalus, an accumulation of fluid in the brain. A shunt is surgically placed to drain the excess fluid away from the brain and redirect it into the abdominal area.
Children and adults with Spina Bifida have been identified as having a greater risk of developing an allergy to latex (rubber) products. Typical symptoms include: watery eyes, wheezing, hives, rashes, swelling, and in severe cases, anaphylaxis (a life threatening reaction). These responses can occur when items containing latex touch the skin, mucous membranes, open areas, or bloodstream (especially during surgery). While it is not known exactly how this allergy develops, it is very important to notify all health care professionals about an experienced reaction of any kind, and to avoid all latex products.
The exact cause of Spina Bifida is still unknown, although it appears that it results from a combination of environmental and genetic factors. Current research indicates that folic acid plays a vital role in the prevention of Spina Bifida and other neural tube birth defects by as much as 70%. Because Spina Bifida occurs during the first month of pregnancy, usually before the mother realizes that she is pregnant, studies have concluded that all women in their childbearing years who are capable of becoming pregnant should consume 0.4 mg of folic acid per day. Folic acid is a B vitamin that can be found in such foods as: cereals, broccoli, spinach, corn and others. It can also be taken as a vitamin supplement.
The care and treatment of Spina Bifida has tremendously improved in every area due to revolutionary surgical techniques and innovative technology. Forty years ago, the survival rate of newborns with Spina Bifida was next to zero. But today, our children not only survive, they have a very bright future. Although they will still face numerous challenges, the disability can be stabilized early in most children, and up to 90% of those born with Spina Bifida can and do lead normal, productive lives in the mainstream of society.
Early intervention programs can help children with Spina Bifida who experience learning problems prepare for school. Once at school, these children can be expected to keep pace with their peers and be fully included in their neighborhood school. In order to achieve independence, children are encouraged to do as much as they can for themselves. As they learn mobility skills, participate in activities with their non-disabled peers, and assume responsibility for their own care, their dreams can become realities.
In reality, we all have varying degrees of ability. A child born with Spina Bifida is a healthy child with certain physical challenges. Like everyone, they need love and understanding, not pity or sympathy. Through education and public awareness, we have made great strides in overcoming society’s negative attitudes, myths, stereotypes, and prejudices against individuals with disabilities. We express our gratitude to all who have helped and supported us throughout the years.
For more information, please contact us:
Phone: (303) 797-7870
PO Box 22994
Denver, CO 80222