[Congressional Record Volume 150, Number 130 (Monday, October 11, 2004)]
[Extensions of Remarks]
[Pages E1919-E1920]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




            OCTOBER IS NATIONAL SPINA BIFIDA AWARENESS MONTH

                                 ______
                                 

                            HON. BART STUPAK

                              of michigan

                    in the house of representatives

                        Friday, October 8, 2004

  Mr. STUPAK. Mr. Speaker, I rise today to recognize 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 over 30 years, works every day 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 this disease and is currently the only 
national organization solely dedicated to advocating on behalf of the 
Spina Bifida community. As part of its service through almost 60 
chapters in more than 125 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 West Michigan Spina Bifida Association, the 
Spina Bifida Association of Southeastern Michigan, the Spina Bifida 
Association of Upper Michigan, and the Southwest Michigan Spina Bifida 
& Hydrocephalus Association 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 these local Spina Bifida 
organizations in Michigan 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. Over 1,500 babies are born with Spina Bifida each year. 
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.
  The exact cause of Spina Bifida is not known, but researchers have 
concluded that women of childbearing age who take daily folic acid 
supplements reduce their chances of having a Spina Bifida pregnancy by 
up to 75 percent. Progress has been made in educating women on the 
importance of consuming folic acid supplements and maintaining diets 
rich in folic acid. Recent data from the Centers for Disease Control 
shows an increase in consumption of vitamins with folic acid by 8 
percent over 2003. Since the Food and Drug Administration decision to 
fortify enriched grains with folic acid, CDC has documented a 26 
percent decline in these birth defects.
  Although this is good news, we will still have babies born with Spina 
Bifida who need intensive care and families that need guidance and 
support in caring for and raising these children. The result of this 
neural tube defect is that most babies suffer from a host of physical, 
psychological, and educational challenges, including paralysis, 
developmental delay, numerous surgeries, and living with a shunt in 
their skulls in an attempt to ease their condition. Today, 
approximately 90 percent of all babies diagnosed with Spina Bifida 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

[[Page E1920]]

must be careful to avoid a host of secondary health problems ranging 
from depression and learning disabilities to skin problems and latex 
allergies.
  After decades of poor prognosis and short life expectancy, 
breakthroughs in research combined with improvements in health care and 
treatment children with Spina Bifida are now living long enough to 
become adults with this condition. However, with this extended life 
expectancy people with Spina Bifida now face new challenges in the 
fields of education, job training, independent living, health care for 
secondary conditions, aging concerns, and other related issues.
  I am proud to cochair the Congressional Spina Bifida Caucus with my 
colleague Representative Christopher Smith. The Congressional Spina 
Bifida Caucus brings increased attention to this condition and advances 
initiatives that will improve the quality of life for those individuals 
and their families living with Spina Bifida. So far we have 43 members, 
and I encourage my colleagues to join the Caucus.
  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. The Spina Bifida 
community and our nation owe a tremendous debt to the SBAA for its work 
over the past three decades. Much more work still needs to be done, and 
I am confident this fine organization and its chapters will lead the 
effort for decades to come. I wish the Spina Bifida Association of 
America the best of luck in its endeavors and urge all of my colleagues 
and all Americans to support its important efforts.

                          ____________________