Editor’s Note: Every year, one in every 33 babies (about 120,000) born in the United States enters the world with a birth defect. Thousands of different birth defects have been identified and birth defects are the leading cause of death in the first year of life. Still, we don’t know the cause of most birth defects – an especially scary fact for any pregnant woman hoping to protect her unborn child. Today, we highlight this vast gap in understanding and one organization valiantly fighting to turn things around.
Rachel Thomas, Birth Defect Research for Children:
Why Aren’t Birth Defects A National Priority?
I was very moved when I read the “Our Story” portion of the Healthy Child Healthy World website. Like Nancy Chuda, I was also exposed to pesticides during my pregnancy. My previous employer decided to ignore the pesticide company’s warning not to spray an area where a pregnant woman was present. The office manager assured me that they wouldn’t spray pesticides in the office but then did so behind my back and told me about it weeks later. (By law, pesticide companies do not have to post a sign inside any building notifying people that they applied pesticides; oddly they are required to post signs outdoors only.)
I was very upset at the time because I knew that this could put my baby at risk. I hoped for the best but unfortunately my daughter was born with several birth defects. The injustice of this situation really bothered me. I decided to research the environmental causes of birth defects to see what I could do to help others from falling victim to this type of situation.
What I discovered was shocking to me. No government agency or research center was monitoring all the pre-natal environmental exposures of parents who have children with birth defects or childhood illnesses. The only organization monitoring the pre-natal exposures of both parents was Birth Defect Research for Children (BDRC) through their National Birth Defect Registry.
Birth Defect Research for Children’s (BDRC) mission is to find the causes of birth defects. Their National Birth Defect Registry (NBDR) is a powerful tool they use in discovering those causes. The Registry was designed through a collaboration of seven prominent scientists. It collects information on all categories of structural and functional birth defects as well as the health, genetic and environmental exposure histories of the mothers and fathers. The data are then analyzed to look for patterns of birth defects. Pattern identification is how most of the major environmental causes of birth defects were first discovered including the effects of thalidomide, radiation, rubella, methyl mercury, DES, Dilantan and others.
Although my story has a happy ending and my daughter is doing extremely well today, many other children born this year will not be so “lucky” because birth defects remain the leading cause of infant death in the United States. According to state birth defect registry statistics, many birth defects are rising significantly. For example birth defects such as Gastroschisis, Atrial Septal Defect and Hypospadias are showing prevalence rate increases of over 100% in some states.
According to the National Research Council, a woman who gets pregnant today has a 50% chance of losing her baby or having a baby with a birth defect or chronic illness. The health of our children is important on so many levels – social, emotional and economic. In 2004, birth defects accounted for hospital costs totaling $2.6 billion. Add that to the additional services that will be needed to accommodate the significant increase in conditions like Autism and asthma, and we’re looking at astronomical cost. According to a recent report from Mt. Sinai School of Medicine, it costs $76 billion to cover the health expenses of American children because of exposure to pollutants.
In light of these sobering statistics, it seems that finding the causes of birth defects and developmental disabilities should be a national priority. At the bare minimum each state should track the number of birth defects in their state to help identify a base line and to document increases that need to be investigated. Yet Alabama, Pennsylvania, Montana, Wyoming, Idaho, Oregon and South Dakota and the District of Columbia do not have birth defect registries at all and one of the largest states, California, only monitors 70,000 out of 526,774 births each year.
If you are concerned about the rate of birth defects in your community, please contact Birth Defect Research for Children. And, if you want more information about participating in the National Birth Defect Registry, click here.
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