[Congressional Record Volume 148, Number 145 (Tuesday, November 12, 2002)]
[Extensions of Remarks]
[Pages E1986-E1987]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                      SPINA BIFIDA AWARENESS MONTH

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                       Tuesday, November 12, 2002

  Mr. SMITH of New Jersey. Mr. Speaker, today, I take the opportunity 
to let my colleagues know that October was National Spina Bifida 
Awareness Month. I think we should all pause for a moment and pay 
tribute to the more than 70,000 Americans--and their family members--
who are currently affected by Spina Bifida. After all, Spina Bifida is 
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 Spina Bifida, 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 expectant 
mothers and fathers. 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 the Tri-State 
Region, which is based in Flemington, New Jersey, 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 the Tri-State Region for all that they have done 
for the families affected by this birth defect, especially those living 
in my district. Their work is truly a labor of love.
  For those colleagues who don't know, 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. Many times, unborn children with Spina Bifida are killed 
by abortion because of a false belief that nothing can be done to help 
victims of this disease. The truth is that today, approximately 90 
percent of all new born 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.
  During this 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 through proper nutrition and pre-
natal care. Simply by taking a daily dose of the B vitamin folic acid 
(which is found in most multivitamins), women of child-bearing age have 
the power to reduced the incidence of Spina Bifida by up to 75 percent. 
That such a simply change in habit can have such a profound effect 
should leave no question as to the importance of awareness and the 
impact of prevention.
  While consumption of folic acid helps with prevention, we must do 
more to ensure a high quality of life for people already living with 
Spina Bifida so more families choose the blessing and joy of having a 
child. The challenges of raising a child with Spina Bifida are 
significant, but the challenges can be overcome. Fortunately, Spina 
Bifida is no longer the death sentence if once was, and now most people 
born with Spina Bifida will likely have a normal or near-normal life 
expectancy. The challenge now is to ensure that these individuals have 
the highest quality of life possible.
  I call upon my House colleagues to provide $3 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 urge the House to take up the recently 
passed Senate version of the ``Birth Defects and Developmental 
Disabilities Prevention Act of 2002,'' (S. 2980), which takes many 
critical steps that will work to prevent Spina Bifida and to improve 
the quality of life for individuals and families affected by this 
terrible birth defect. I am hopeful that we 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. Much more work still 
needs to be done, and I am confident this fine organization and its 
chapters will lead the

[[Page E1987]]

effort for decades to come. I wish the Spina Bifida Association of 
America and the Spina Bifida Association of the Tri-State Region the 
best of luck in their endeavors and urge all of my colleagues and all 
Americans to support their important efforts.

                          ____________________