[Congressional Record Volume 150, Number 130 (Monday, October 11, 2004)]
[Senate]
[Pages S11289-S11290]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                 NATIONAL SPINA BIFIDA AWARENESS MONTH

  Mr. DODD. Mr. President, I rise today to remind my colleagues 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.
  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 born with Spina bifida each year. There are three 
different forms of Spina bifida--the most severe being myelomeningocele 
Spina bifida, which causes nerve damage and severe disabilities. 
Myelomeningocele Spina bifida is diagnosed in 96 percent of children 
born with this condition. Additionally, 70 to 90 percent of the 
children born with Spina bifida are at risk of mental retardation, a 
condition caused 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 can reduce their chances of having a Spina Bifida pregnancy 
by up to 75 percent. Progress has been made with regard to the 
importance of consuming folic acid supplements and maintaining diets 
rich in folic acid. The September 17, 2004, edition of the Centers for 
Disease Control and Prevention publication, Morbidity and Mortality 
Weekly Report, finds that 40 percent of women of childbearing age 
reported taking a vitamin containing folic acid every day, an increase 
of eight percentage points from 2003. This increase suggests a 
substantial positive change in behavior. Since the Food and Drug 
Administration decision to fortify enriched grains with folic acid, the 
CDC has documented a 26 percent decline in these birth defects. Despite 
this success, thousands of pregnancies each year continue to be 
affected by these preventable birth defects. Thus, increasing use of 
vitamins containing folic acid remains an important strategy for 
preventing these birth defects.
  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. As a result of this 
neural tube defect, 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 are also at risk of a host of secondary 
health problems ranging from depression and learning disabilities to 
skin problems and severe latex allergies.
  Lifesaving breakthroughs in research, combined with improvements in 
health care and treatment of children with Spina Bifida, now 
fortunately lead many with Spina bifida to live into adulthood. 
However, adults with Spina bifida face many new challenges in the 
fields of education, job training, independent living, health care for 
secondary conditions, and concerns related to aging.
  I am grateful for my colleague from Missouri, Senator Bond who, along 
with myself, has been working to improve the quality of life for 
individuals with Spina bifida with the passage of the Birth Defects and 
Developmental Disabilities Prevention Act of 2003 and supporting 
increased funding for the National Spina Bifida Program at the Centers 
for Disease Control and Prevention. In fiscal year 2004, Congress 
provided a much needed $3 million in funding for the National Spina 
Bifida Program. I strongly urge my colleagues to support increased 
funding in fiscal year 2005 to ensure that the CDC has the resources 
necessary to prevent Spina bifida, improve quality-of-life for those 
living with the condition, and to deliver important public health 
messages to those communities most at-risk for a Spina bifida 
pregnancy.

[[Page S11290]]

  I want also to recognize the special work of the Spina Bifida 
Association of America, an organization that has helped people with 
Spina bifida and their families for nearly 30 years, working 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 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 approximately 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 Spina Bifida Association of Connecticut 
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 SBAC for all that they have done for the families affected 
by this birth defect, especially those living in my State. The Spina 
bifida community and our nation owe a tremendous debt to the SBAA for 
its work over the past three decades. I am honored to be an honorary 
co-chair along with Majority Leader Frist of the 16th Annual Roast for 
Spina Bifida to benefit the Association and its work in local 
communities around the country.
  As a nation, we have accomplished a great deal in our battle against 
birth defects. However, much more work remains to be done. I urge all 
of my colleagues and all Americans to endorse the important efforts to 
prevent Spina Bifida but also to support those already living with this 
often debilitating birth defect. Those living with Spina bifida and 
their loved ones deserve our utmost support. It is my hope that by 
recognizing National Spina bifida Awareness Month we can move closer to 
the laudable goal of eventually eliminating the suffering caused by 
this terrible birth defect.

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