[Congressional Record (Bound Edition), Volume 147 (2001), Part 13]
[Extensions of Remarks]
[Page 18422]
[From the U.S. Government Publishing Office, www.gpo.gov]



    CALLING ATTENTION TO SPINA BIFIDA AND HONORING THE SPINA BIFIDA 
ASSOCIATION OF AMERICA FOR HELPING VICTIMS AND FAMILIES OF THIS DISEASE 
                          FOR NEARLY 30 YEARS

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                        Tuesday, October 2, 2001

  Mr. SMITH of New Jersey. Mr. Speaker, I rise today to pay tribute to 
more than 70,000 Americans--and their family members--who are currently 
affected by spina bifida, a debilitating disease caused when a baby's 
spine fails to close properly during pregnancy. Additionally, Mr. 
Speaker, I rise to highlight the good works of the Spina Bifida 
Association of America, an organization that has helped people with 
spina bifida and their families for nearly 30 years.
  Mr. Speaker, as most Members know, spina bifida, is the most 
frequently occurring permanently disabling birth defect afflicting 1 
out of every 1,000 babies born in this country 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 disease. Between 70 to 90 percent of 
the children born with spina bifida are at risk of mental retardation 
when fluid collects around the brain.
  With proper medical care, people who suffer from spina bifida can 
lead full and productive lives. But they must learn how to move around 
using braces, crutches or wheelchairs, how to learn and how to function 
independently. They must also be careful to avoid a host of secondary 
health problems ranging from depression and learning disabilities to 
skin problems and latex allergies.
  Because spina bifida can be detected before birth by using prenatal 
tests, more than 50 percent of babies diagnosed with spina bifida are 
aborted--their lives cruelly snuffed out because of their anomalies. 
Tragically, expectant parents are wrongly pressured to abort their 
child if spina bifida is detected during pregnancy. It is imperative to 
get the word out and let expectant parents know that spina bifida is 
not a death sentence. Those parents who have rejected such pressure 
have had their lives enriched through the love they share with their 
child.
  The Spina Bifida Association of America works tirelessly to help 
families meet the challenges and enjoy the rewards of raising their 
child. 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 so that 
they make life-affirming, family enriching decisions. The SBAA then 
works to provide lifelong support and assistance for affected children 
and their families.
  Today, about 90 percent of all babies diagnosed with this disease 
live into adulthood, about 80 percent have normal IQs and about 75 
percent participate in sports and other recreational activities. We 
also know that spina bifida may be preventable if women consume folic 
acid supplements during their childbearing years and early stages of 
pregnancy. The daily amount of folic acid needed is typically found in 
most multivitamins.
  It is heartening to see such promising statistics for people with 
spina bifida. 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 will lead the effort for decades to come.

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