[Congressional Record (Bound Edition), Volume 148 (2002), Part 17]
[Senate]
[Pages 22743-22744]
[From the U.S. Government Publishing Office, www.gpo.gov]




                      SPINA BIFIDA AWARENESS MONTH

 Mrs. HUTCHISON. I rise today to let my colleagues know that 
October is National Spina Bifida Awareness Month and to pay tribute to 
the more than 70,000 Americans--and their family members--who are 
currently affected by spina bifida--the Nation's most common, 
permanently disabling birth defect. The Spina Bifida Association of 
America--SBAA--an organization that has helped people with spina bifida 
and their families for nearly 30 years, works every day--not just in 
the month of October--to prevent and reduce suffering from this 
devastating birth defect.
  The SBAA was founded in 1973 to address the needs of the individuals 
and families affected by and is currently the only national 
organization solely dedicated to advocating on behalf of the spina 
bifida community. As part of its service through 60 chapters in more 
than 100 communities across the country, the SBAA puts expecting 
parents in touch with families who have a child with spina bifida. 
These families answer questions and concerns and help guide expecting 
parents. The SBAA then works to provide lifelong support and assistance 
for affected children and their families.
  Together the SBAA and the Spina Bifida Association of Texas work 
tirelessly to help families meet the challenges and enjoy the rewards 
of raising their child. I would like to acknowledge and thank SBAA and 
the Spina Bifida Association of Texas for all that they have done for 
the families affected by this birth defect, especially those living in 
my State.
  Spina bifida is a neural tube defect that occurs when the central 
nervous system does not properly close during the early stages of 
pregnancy. Spina bifida affects more than 4,000 pregnancies each year, 
with more than half ending tragically in abortion. There are three 
different forms of spina bifida with the most severe being 
myelomeningocele spina bifida, which causes nerve damage and severe 
disabilities. This severe form of spina bifida is diagnosed in 96 
percent of children born with this condition. Between 70 to 90 percent 
of the children born with spina bifida are at risk of mental 
retardation when spinal fluid collects around the brain.
  We must do more to ensure a high quality of life for people with 
spina bifida so more families choose the blessing and joy of having a 
child with this condition. Fortunately, spina bifida is no longer the 
death sentence it once was and now people born with spina bifida will 
likely have a normal

[[Page 22744]]

or near normal life expectancy. The challenge now is to ensure that 
these individuals have the highest quality of life possible.
  Today, approximately 90 percent of all babies diagnosed with this 
birth defect live into adulthood, approximately 80 percent have normal 
IQs, and approximately 75 percent participate in sports and other 
recreational activities. With proper medical care, people who suffer 
from spina bifida can lead full and productive lives. However, they 
must learn how to move around using braces, crutches, or wheelchairs, 
and how to function independently. They also must be careful to avoid a 
host of secondary health problems ranging from depression and learning 
disabilities to skin problems and latex allergies.
  The Spina Bifida Association of Texas has four chapters in San 
Antonio, Austin, Dallas, and Houston. These chapters serve the 
individuals and their families with spina bifida in the great state of 
Texas through a number of programs and services including providing 
emergency assistance; running a summer camp for children and a weekend 
retreat for adults; scholarships; and medical seminars. In addition, 
the Texas Scottish Rite Hospital is the largest single-site 
interdisciplinary center for the treatment of spina bifida in the 
United States and provides ongoing treatment for more than 13,000 
children annually, without charge.
  During the month of October, the SBAA and its chapters make a special 
push to increase public awareness about spina bifida and teach 
prospective parents about prevention. Simply by taking a daily dose of 
the B vitamin, folic acid, found in most multivitamins, women of child-
bearing age have the power to reduce the incidence of spina bifida by 
up to 75 percent. That such a simple change in habit can have such a 
profound effect should leave no question as to the importance of 
awareness and the impact of prevention.
  As a member of the Senate Appropriations Committee, I am pleased that 
we provided $2 million in much-needed funding to establish a National 
Spina Bifida Program at the National Center for Birth Defects and 
Developmental Disabilities--NCBDDD--at the Centers for Disease Control 
and Prevention--CDC--to ensure that those individuals living with spina 
bifida can live active, productive, and meaningful lives. In addition, 
I am proud that we in the Senate recently passed by unanimous consent 
the Birth Defects and Developmental Disabilities Prevention Act of 
2002, which takes many critical steps that will work to prevent spina 
bifida and to improve quality of life for individuals and families 
affected by this terrible birth defect. I am hopeful that the House 
will act shortly to pass the measure so it can be sent to the President 
for his signature.
  I again wish to thank the SBAA and its chapters for all of their hard 
work to prevent and reduce suffering from this birth defect and for 
their commitment to improve the lives of those 70,000 individuals 
living with spina bifida throughout our Nation. I wish the Spina Bifida 
Association of America the best of luck in its future 
endeavors.

                          ____________________