[Congressional Record Volume 149, Number 139 (Friday, October 3, 2003)]
[Senate]
[Pages S12443-S12444]
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 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 and 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 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. Yet, 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 grateful for my colleague from Missouri, Senator Bond who, along 
with myself, sponsored the Birth Defects and Developmental Disabilities 
Prevention Act of 2003, S. 286. This important legislation helps 
prevent spina bifida as well as meets the current and growing needs of 
individuals with spina bifida live active, productive, and meaningful 
lives. Our legislation helps those with spina bifida and their families 
learn how to treat and prevent secondary health problems which range 
from learning disabilities and depression to severe allergies, and 
respiratory and skin problems that make life difficult and at times, 
fraught with danger that make life difficult for these patients by 
authorizing the National Spina Bifida Program at the Centers for 
Disease Control and Prevention, CDC. All of these problems can be 
treated or prevented, but only if those with spina bifida are properly 
educated and taught what they need to do to keep themselves healthy. 
The national program focuses and coordinates the agency's efforts to 
educate health care providers about the range of spina bifida issues--
including the availability of in utero surgery--as well as help promote 
the dissemination of information regarding how to prevent the myriad 
complications of the condition.
  Last year, I chaired a hearing of the Committee on Health, Education, 
Labor, and Pension's Subcommittee on Children and Families on birth 
defects, in which Connecticut resident Fred Liguori's testimony 
provided a parent's

[[Page S12444]]

valuable perspective on spina bifida. After losing two pregnancies, the 
Liguori's were informed their unborn child had spina bifida. After 
careful consideration and information from the SBAA, the Liguoris 
elected to proceed with in utero surgery that could reduce the effects 
of spina bifida. Since the late 1990s, doctors at four U.S. hospitals 
have been operating before birth on babies diagnosed with spina bifida. 
By closing the spinal lesion early in pregnancy, these doctors believe 
they can minimize the damage created by fluid leaking from the spine, 
as well as by the spinal cord's contact with amniotic fluid. Surgeons 
have found that closing the hole in the spine in this fashion before 
birth may correct breathing problems in 15 percent of the children 
receiving the procedure and may reduce the need for a shunt to drain 
brain fluid build up by between 33 percent and 50 percent. While the in 
utero surgery was successful, their three-year-old son still requires 
extensive therapy and medical attention. Fred Liguori's testimony made 
it clear that a national spina bifida program is critically needed for 
the prevention of this condition and to improve the quality of life for 
those individuals and their families living with spina bifida. 
Fortunately, in fiscal year 2003, Congress was wise to provide $2 
million in funding to establish and support a national spina bifida 
program and is poised to provide a much-needed increase in funding for 
fiscal year 2004. The House provided a $500,000 increase while the 
Senate included a total of $3 million for the program for fiscal year 
2004. I strongly urge my colleagues to support the Senate allocation as 
this level of funding is needed to ensure that the CDC has the 
resources necessary to support and expand its comprehensive efforts 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.
  I want also to recognize the special work of the Spina Bifida 
Association of America, SBAA, an organization that has helped people 
with spina bifida and their families for nearly 30 years, working 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 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 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, 
SBAC, 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. I 
would also like to commend the leadership of Hal Pote, President of the 
Spina Bifida Foundation--uncle of Greg Pote who lives with spina 
bifida, Alex Brodrick, President of the Spina Bifida Association of 
America, father of Joel Brodrick who lives with spina bifida, and Cindy 
Brownstein who serves as Chief Executive Officer of the SBAA. The spina 
bifida community and our Nation owe a tremendous debt to the SBAA for 
its work over the past three decades.
  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.

                          ____________________