[Congressional Record (Bound Edition), Volume 149 (2003), Part 18]
[Extensions of Remarks]
[Page 25004]
[From the U.S. Government Publishing Office, www.gpo.gov]




                      SPINA BIFIDA AWARENESS MONTH

                                 ______
                                 

                            HON. BART STUPAK

                              of michigan

                    in the house of representatives

                       Thursday, October 16, 2003

  Mr. STUPAK. Mr. Speaker, 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 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 57 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 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. Spina Bifida affects more than 4,000 pregnancies each year, 
with 1,500 babies being 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%. Progress has been made convincing women of the importance of 
consuming folic acid supplements and maintaining diets rich in folic 
acid. However, this public education campaign must be enhanced and 
broadened to reach segments of the population that have yet to heed 
this call.
  Although folic acid consumption reduces the risk and incidence of 
Spina Bifida pregnancies, 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 ameliorate their condition. 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.
  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 Co-Chair the newly established Congressional Spina 
Bifida Caucus with my colleague Representative Christopher Smith. The 
Congressional Spina Bifida Caucus will bring increased attention to 
this condition and advance initiatives that will improve the quality of 
life for those individuals and their families living with Spina Bifida.
  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.

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