Birth Defect Research for Children (BDRC) is a remarkable nonprofit engaged in exemplary work that benefits today’s children and generations to come. It is a model of high intelligence, cutting-edge research, parent service, and unflagging dedication.
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.
The Association of Birth Defect Children has been a leader in the field since the late 1980's. The organization partnered with the NJ Agent Orange Commission in the 1990's to gather data on the birth defect children of Vietnam veterans and provide that data to the National Academy of Sciences - Institute of Medicine committee reviewing scientific studies and making recommendations to the US Dept. of Veterans Affairs concerning possible additional additions to the US Code governing healthcare and monetary assistance to those affected. The organization has been "always there" for Vietnam veterans and their affected children.
As coordinator of the Physicians Committee for Responsible Medicine’s Humane Seal campaign, I am always on the lookout for health charities that perform effective research without the use of animals.
While investigating Birth Defect Research for Children for a charity spotlight article, I learned of BDRC’s National Birth Defect Registry, a compilation of data on birth defects that is evaluated by researchers to find clusters of defects that may lead to similar prenatal factors. Data reviews have identified factors that cause birth defects in certain areas and have been presented to congressional committees, national media forums, and federal agencies.
In addition to research, BDRC promotes birth defect awareness by spreading information about prevention and by providing a “parent matching” service to connect parents of children with birth defects to support networks.
BDRC’s humane research and advocacy efforts have been invaluable in the fight to eradicate birth defects, and I think more charities should adopt their human-based approach.
I find that this organization provides the ultimate in assistance and research as it relates to children with birth defects. I participated in the Registry of the children of Vietnam Veterans with birth defects and have knowledge of the Registry's results and how it is used to further the public and government knowledge of the tragic results of our exposure to toxic herbicides. The relationship of this organization to its "followers" is one of trust in that we know that our problems are looked at with care, concern and that their research is real and will provide and and solutions to our issues.
Birth Defect Research For Children, Inc. is vitally effective and well connected to the community of concerned parents who have struggled with, as well as mastered the challenges of birth defects. They have set up invaluable registries, collected data, implemented policy changes that support many individuals across the Country. I met with the Director, Betty Mekdeci years ago when we were chosen as members of the Public Interest Partners by the National Institute Of Environmental Health Sciences. Our goals in this role, working together with many other disease focused organizations is to seek common environmental threads of environmentally triggered disease. The information provided by this organization, Birth Defect Research For Children is understandable, current and the willingless of this organization to work with other organizations for a common goal is outstanding.
BDRC stays out front in tracking relevant data on exposures to developmental toxins, provides sound and essential advice to policy makers, relates in a compassionate and effective way to affected individuals and their families, and fills a unique niche in social and health advocacy.
I have a daughter that was born with spina bifida which was caused by her father's exposure to Agent Orange in Vietnam. My husband died of related heart problems. I was left alone to deal with my daughter's disabilities and a long and emotional battle with the VA system.
Without Betty and Association of Birth Defect Children. I have no idea how I would of made it through this 7 years of hope then let down, then more hope and more tears. Betty has been able to provide me with facts to help me keep going even in the toughest times.
This organization has helped not only me and my daughter but also countless Veterans that served in Vietnam it has become our voice to the world to the effects of Agent Orange on not only the Veterans who served. Their entire families who never served but will spend the rest of our lives fighting the war in Vietnam.
My family was injured by pesticides in 1991 resulting in chronic illnesses which plague us all to this day. Betty Mekdeci, the director of Association of Birth Defect Children, has been an inspiration. She and ABDC have been an excellent source of information about how to understand the linkages between exposures and disease, and this has helped us avoid further damage. Sure, ABDC is about research about birth defects, but many of us suffer from toxicant induced illnesses that surfaced in adulthood. ABDC seized the opportunity to inspire chemically injured persons such as myself, making us willing to teach others in our communities so that they and their offspring may enjoy more healthful lives. ABDC has a reputation for integrity, intelligence, and heart -- and has done an amazing job of gathering and analyzing toxic injury data showing patterns of birth defects and chronic illness.
The Association of Birth Defect Children is the go-to organization for the families of Vietnam veterans, and all veterans, with children who have unexplained birth defects, they believe are related to the parent's in-service exposures.
The personal attention, expertise, and compassion that the staff gives to our individual veterans and their families who contact the association is exemplary, and a standard by which all service organizations should be measured.
The Excecutive Director and her staff have lent their knowledge and expertise on chilren's health to the Vietnam Veterans of America Agent Orange Committee continuously since the inception of the organization, advising on a multitude of aspects related to chidren's health and exposures, serving in advisory capacities and holding worshops to educate on the latest developments in the ever-evolving field of children's health.
Through personal contact, a very fine web page, and email updates, the Association of Birth Defect Children provide continuous updates on the ever-evolving science and research.
Veteran families have given the highest praise to the organization for its preeminent and unique role in advising families on the unfortunate legacy of toxic chemical exposure.
I am the national committee chair for Vietnam Veterans of America's Agent Orange/Dioxin and other toxic substance committee. The link between parental toxic exposures and birth defects in their offspring is an issue that needs more research. Birth Defect Research for Children
provides a valuable service to the general public on the birth defect issue. They provide a data gathering service for Vietnam Veterans who were exposed to Agent Orange herbicides and have childrend with birth defects. I have worked with the organization on the birth defect issue and can testify to the great work they are doing.