One of the major unrecognized problems facing our nation is the epidemic of illnesses among children: one out of three children suffers from a chronic disorder. Birth defects is the single largest cause of premature and infant deaths. (These statistics come from sources as wide-ranging as the March of Dimes, Mt. Sinai’s Center for Community and Preventive Health, and the Centers for Disease Control.)
For several years, my husband and I conducted background research for our book (Poisoned for Profits: the Toxic Assault on Our Children, published by Random House) to investigate the trends and causes of this epidemic of childhood chronic disease. One of the most distressing facts we uncovered was the abysmal lack of knowledge and assistance, from the public sector at all levels and even from nonprofit institutions chartered to assist…until we (like parents of a child with a birth defect) found Birth Defect Research for Children (BDRC).
We as journalists found the expertise and responsiveness of BDRC of the highest standard. We also discovered the excellence of the BDRC services to parents, communities, scientists and all the institutions struggling to understand, deal with, and prevent the tragedy of birth defects.
BDRC was founded and continues to be headed by Betty Mekdeci, whose son was born with a birth defect. At that time, struggling to find information and support, she found almost none, and so she created an organization that fills those needs for others.
Neither the federal government nor most states (and no localities) maintain a registry of childhood disabilities and illnesses and parental exposures to toxins, especially not for children with birth defects. So, if many children in your neighborhood are born within the same few years with birth defects, you and your neighbors have no way to tell if this is a normal rate or an abnormal one and thus perhaps the result of some abnormal cause. You would have nowhere to turn to access scientific research, nor to find other families for mutual support.
Birth Defect Research for Children stepped forward to fill this enormously critical gap. In collaboration with a group of prominent scientists, they established the National Birth Defect Registry. This powerful tool has been used to identify a pattern of birth defects in numerous American communities, as well as among the children of Vietnam veterans and an unusual cluster of craniofacial birth defects in the children of Gulf War veterans. Veterans exposed to Agent Orange consider the BDRC and Betty Mekdeci as their Joan of Arc. Betty presented the BDRC data on Gulf War veterans to the Presidential Advisory Committee on Gulf War Illnesses, and to the Veterans’ Administration. Registry data have been presented to the National Academy of Sciences, the National Institute of Environmental Health Sciences, and the Environmental Protection Agency, and in many national and international media forums.
The Environmental Health Perspectives (the journal of the National Institute of Environmental Health Sciences) cited BDRC’s National Birth Defect Registry as a new path to exploring linkages between the environment and birth defects in an article on “Environmental Factors in Birth Defects”. BDRC is currently a partner with the University of Texas in a study funded by the Veterans Administration, looking further into causes of the facial defects among children of Gulf War vets. Without data from BDRC’s Registry, this study would not have been possible.
Betty Mekdeci herself is nationally recognized as an expert in this field. The number of national panels she has served on is almost countless. Her scientific understanding puts her on a par with PhDs, though she is self-taught. Whenever there is a conference on birth defects and on environmental toxicants, Betty is one of the invited experts. She represents the voice of a parent melded to the mind of a brilliant researcher.
An example: when the National Institutes of Health convened a working group to explore the state of knowledge on identifying and preventing environmental risks to children’s health. The invitees were a small number of experts, from Yale University to EPA to Mt Sinai Hospital to Deans of Public Health schools, and including the then Director of the National Center on Birth Defects and Developmental Disabilities...and Betty Mekdeci.
Betty also co-authored the premier paper on birth defects and the environment, with Dr. Ted Schettler, one of the nation’s top public health scientists.
It is not only scientists and journalists who find Birth Defect Research for Children indispensable. For families of children with birth defects, BDRC provides both scientific expertise as well as services. The organization can match families with other families who have children with similar birth defects, which reduces the isolation and anxiety often associated with having a child with an unusual illness. They offer information about diagnosis, treatment and resources. They have identified a national network of support groups that can help families with local information, resources and assistance.
For families and professionals alike, BDRC maintains the nation’s most extensive, fully vetted information service on the environmental poisons that may cause birth defects. In addition to its databases, BDRC maintains a website of information and resources that receives more than 240,000 visitors a year.
Families from neighborhoods with high rates of birth defects turn to BDRC for the assistance that is missing from any other source. An example: in the small town of Dickson, TN, an extraordinarily large number of babies were born within a three year period with cleft palates and cleft lips in one quadrant of the town. The parents called upon their local public health agency for help in understanding how this happened and what to do. No response. They turned to the state. No response. They turned to the Centers for Disease Control. No help. The families finally heard of Birth Defect Research for Children and asked for the organization’s assistance (pro bono, of course). BDRC helped the community confirm a cluster of cleft cases and identified a potent toxicant leaching from a dump into the water the mothers had drunk during their pregnancies as the likely trigger. The town (after some delay) remedied the situation, and new birth defects did not occur (tho, of course, the affected children are still suffering).
Birth Defects Research for Children is a model that shows families, communities, scientists and policy makers how to give individual help to individual children while creating the solid science upon which to prevent other children from such enormous suffering.
I've personally experienced the results of this organization in...
Through the BDRC databases and files. I and my co-author were able to incorporate into our book the substantive data about the extent of birth defects in the U.S. as well as the scientific research about likely causes, In addition, BDRC connected us to parents whom we interviewed, to use as case examples in the book. Betty Mekdeci also gave us what amounted to a course in the science of fetal and earIy childhood development. Because of the excellence of this organization, I was glad to join its Board.
Ways to make it better...
If I had to make changes to this organization, I would...
BDRC needs two changes in order to fulfill its capacities. It needs more funding and more visibility (more funding would of course enable the organization to achieve higher visibility).
Will you volunteer or donate to this organization beyond what is required of board members?
How much of an impact do you think this organization has?
Will you tell others about this organization?
How did you learn about this organization?
Through the research I and my co-author engaged. Scientists in the field of children's environmental health unfailingly pointed us to BDRC as the reliable source of information and research.
What is this organization's top short-term priority?
To extend its effectiveness by reaching more parents (to enhance its Birth Defects registry) and thus to deepen the data upon which substantive research can be pursued).
What is its top priority in the long run?
To reduce the incidence of birth defects in the future by uncovering the causes and thus make informed preventive action possible.
When was your last experience with this nonprofit?