July 26, 2002

Good morning and thank you all for joining us. Today the Subcommittee on Children and Families will examine two crucial questions - first, how do we best prevent birth defects and, second, how do we best support those born with birth defects and the families and loved ones that work to assure their care.

We should begin initially with an examination of the problems presented by birth defects. Birth defects are the leading cause of infant mortality in the United States and affect more than 150,000 infants born each year, and in many cases, children with birth defects face a lifetime of disability. They are the leading cause of death in the first year of life. Sadly, the parents of one out of every 28 babies receive the terrifying news that their baby has a birth defect. Both genetic and environmental factors can cause the more than 4,000 known birth defects. However, the causes of about 60 percent of birth defects are currently unknown.

Each and every day in the United States, more than 400 children are born with a birth defect. Tragically, in the same day 17 infants will die due to a birth defect. Another 78 infants will lose their lives before they reach their first birthday because of a critical birth defect. The wonderful pictures that surround the dais today show children - Nicholas Ligouri of Granby, CT, who is with us today and is the son of Fred Ligouri who we will hear from on the second panel and Gregory Pote, who I understand is also with us this morning and is the nephew of another witness, Hal Pote, who will also testify on the second panel. These are children that are thankfully very much with us. It is because of people like Greg and Nicholas that we are here today. So the question is not only how do we best prevent birth defects, but also how do we best support those born with birth defects and the loved ones that work so hard to provide for their care.

I know that every parent here with us today will agree that there is no greater gift for a parent than that received upon the birth of a child. As we also know, with such a great gift comes great responsibility. However, for parents with a child born with a severe birth defect, such a great gift brings with it even more responsibility. Every parent wants the very best for their child. Parents of children with birth defects are clearly no different. The blessing that comes with the birth of a child is clearly no less joyous for parents of a special needs child. However, it's only reasonable to accept that parents of a special needs child may require more assistance in order to ensure that their children receive the supportive services they require and deserve. I believe that as policy makers we have responsibilities as well. Our responsibility should lead us to enact effective, helpful systems of care that not only prevent birth defects but that also provides aide to those with birth defects so that they can achieve all that their abilities allow.

Thankfully, we have made progress. Since 1960, the number of infants dying due to birth defects has been cut by more than half. We now know that there exists some simple measures that can greatly decrease the chances of birth defects. We must work to ensure that all women of childbearing age are aware that there are certain, often easy steps that will help to ensure a safe and healthy pregnancy. For example, we know that a modest 400 microgram daily dose of the B vitamin folic acid could prevent 50 to 70 percent of all cases of Spina Bifida and other Neural Tube Defects (NTDs). While encouraging as these numbers may be, we also know that about half of all pregnancies are unplanned and that in order to be effective women must be taking the required dose of folic acid BEFORE they get pregnant. And while studies indicate the message stressing the critical importance of folic acid is increasingly being heard, we all know that behaviors do change overnight. I believe that if we continue our educational efforts, the desired changes in behavior will occur, as evidenced by the fact that the number of women who smoke during pregnancy has dropped approximately 30 percent since 1989. However, we must continue our work to spread lifesaving messages that truly prevent birth defects.

Efforts to prevent birth defects are tremendously worthy. In fact, they should be strengthened. And while the importance of birth defect prevention cannot be overstated, the fact remains that there is no one action that will prevent all birth defects.

While progress has been made both with regard to birth defect prevention and efforts to better the lives of those living with birth defects, this is not to say that more can't be done. In fact, Congress can do more. The Birth Defects Prevention Act (BDPA) of 1998 authorized the Centers for Disease Control and Prevention to conduct programs aimed at the prevention of birth defects through surveillance, research and education. With the authority given by the BDPA, the National Center on Birth Defects and Developmental Disabilities at CDC provides funding to 28 states to develop, implement, and/or expand community-based birth defects tracking systems, programs to prevent birth defects, and activities to improve access to health services for children with birth defects. However, the BDPA's authorization ends this year. I look forward to working with my colleague, Senator Bond, to reauthorize this important legislation and maintain our commitment to preventing birth defects and ensuring the quality of life for those living with birth defects.

I am also encouraged by efforts underway to create a National Spina Bifida Program. I believe that such a program could greatly improve our efforts to prevent the incidence and morbidity of Spina Bifida and other Neural Tube Defects (NTDs). A National Spina Bifida Program would also have the effect of greatly improving the quality of life of the more than 70,000 people presently living with this often severely-disabling birth defect. Thankfully, advances over the years in medical treatment, such as the development of in-utero surgery, have allowed children with Spina Bifida to become adults living with Spina Bifida. A National Spina Bifida Program, I believe, would provide vital resources to help these individuals lead full and rewarding lives.

It is my hope that the discussion we have this morning will provide with an outline that will lead to advances in both prevention of birth defects and the development of helpful systems of care for those living with birth defects. So, it is with great optimism that we begin today's hearing. I want to thank all of our witnesses for joining us today, and I look forward to their testimony.

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