The Senate Health, Education, Labor, and Pensions Subcommittee on Children and Families held a July 26 hearing to discuss birth defects, the strategies for prevention of birth defects, and what can be done to ensure a quality life. Subcommittee Chair Christopher Dodd (D-CT) opened the hearing, saying, “Every parent wants the best for their child.” Noting that the number of infants dying from birth defects has decreased by 50 percent since the 1960s, Sen. Dodd said, “We must ensure that all women of childbearing age know what they can do to prevent such birth defects.”
Sen. Dodd also noted that Congress needs to reauthorize the Birth Defects and Prevention Act of 1998 (P.L. 105-168) this year. The law established regional centers operated by the Centers for Disease Control and Prevention (CDC) to conduct research on the prevention of birth defects. It also created a National Information Clearinghouse on Birth Defects to collect and disseminate information. “I anticipate widespread support,” he said.
Dr. Jose Cordero of the National Center on Birth Defects and Developmental Disabilities at the CDC told the subcommittee about the work of the center. Stating that birth defects are the leading cause of infant mortality in the United States, Dr. Cordero added that “7 percent of children with a birth defect also have a serious developmental disability.” He noted that these children and their parents face numerous challenges over the course of their lives.
In speaking to prevention efforts, Dr. Cordero discussed the importance of folic acid. In 1992, the U.S. Public Health Service issued a recommendation that all women of childbearing age should take 400 mg of folic acid to prevent neural tube birth defects. “Compelled by this information,” Dr. Cordero said that beginning in 1996 the Food and Drug Administration began requiring fortified cereals to include folic acid. According to his testimony, the use of folic acid has led to a 30 percent decline in the prevalence of spina bifida.
Noting that the CDC is undertaking the largest study on birth defects, Dr. Cordero said, “We are very optimistic about our ability to use science to identify new causes of birth defects and disabilities.” However, he continued, “Until all causes of birth defects are identified,” prevention is still important.
The subcommittee also heard testimony from Harold Pote of the Spina Bifida Foundation, who focused his oral remarks on the quality of life and the costs for individuals living with spina bifida. “As a result of spina bifida, babies and children suffer from a very broad range of challenges,” he said. Specifically, he noted that the secondary issues that develop as a result of the birth defect, such as urological problems, mental retardation, developmental disabilities, and a host of other physical and neurological problems, are not generally addressed in research. “Our nation must still take the steps that make sure that the thousands of people living with spina bifida have a high quality of life.”
Mr. Pote also said that it is estimated that the lifetime cost of care for individuals with spina bifida can be between $500,000 and $1 million. “The folks who are the least able to afford these burdens of medical costs are the folks who are most likely to have children with spina bifida,” he said.
Additionally, Mr. Pote spoke about the promise of in utero surgery, saying that early studies show that in utero surgery on babies diagnosed with spina bifida can reduce the need for a shunt by 30 to 50 percent.
Dr. Nancy Green of the March of Dimes said, “The statistics on birth defects are very troubling.” She stated that the March of Dimes is committed to funding research into the prevention of birth defects, saying that in 2001, the organization spent $39.7 million on such research.
As a result of research funded by the March of Dimes, a number of discoveries were made about Fetal Alcohol Syndrome (FAS). “FAS is the most common preventable birth defect in the U.S. and affects about 3,000 infants each year,” she said, adding that the March of Dimes also is “funding outreach efforts to teach women about healthy behaviors during pregnancy.”
Dr. Green also strongly urged Congress to reauthorize the 1998 law, saying that it had been tremendously effective.
The subcommittee heard powerful testimony from Fred Liguori, the father of a 3-year-old son with spina bifida. After his son was diagnosed with spina bifida in utero, he and his wife decided to have in utero surgery performed. Mr. Liguori noted that his son is considered to have a mild case of spina bifida because he is able to walk on his own and he had not required a shunt and attributed this to his surgery. However, he said, “More needs to be done to improve the quality of life for individuals living with spina bifida,” adding that problems with incontinence are particularly difficult for children. “Nothing has been done to address this.”
