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Betty Mekdeci, Executive Director, Birth Defect Research for Children Why my child? This is the question every parent asks when their child has been born with a birth defect or developmental disability. It is the question my family asked when our son, David, was born with a missing hand in 1975. Birth Defect Research for Children (BDRC) was created to answer our questions and to help other families going through the same challenges. We started the organization in 1982 because we wanted BDRC to be everything we needed but could not find when David was born. Through BDRC, we have created a variety of programs and services, including the National Birth Defect Registry and the Parent Matching Program. Having a child who is born different can be challenging and lonely. Families want to meet others with children with similar birth defects, so we created a national parent matching program that links families with the same conditions. Parents have reported to us how much parent matching has helped. “I met my best friend through your parent matching project. No one understands what it is like to have a child with a serious heart defect like another mother whose child has the same thing,” explained one of the mothers of the Parent Matching Program. “When your child is born with a rare birth defect, you feel so alone. Through parent-matching, I was able to connect with other families and form a support network.” “I wondered if other veteran’s children were having repeated ear infections,” recalls one of the parents. “Through the parent matching program, I found that the answer was ‘yes’.” In the late 1980s, we researched how the major causes of ‘non-genetic’ birth defects had been discovered. Approximately 20 percent of birth defects are inherited through genetic mechanisms; the other 80 percent have some triggering event during or prior to the pregnancy. Through further research and studies, we decided to create the National Birth Defect Registry in 1990 with a team of scientists with expertise in environmental toxins, genetics, epidemiology, and birth defects. We now have a registry with 10,000 cases. We collect data on both structural (spina bifida, oral clefts, etc.) and functional birth defects (autism, ADHD, intellectual impairment) as well as exposures of the mothers and the fathers. We also collect data on all kinds of birth defects and exposures to identify patterns of birth defects emerging with certain exposures. If we detect a pattern, it generates a hypothesis to test through other forms of research. We are the only registry of its kind in the world, and we have been able to find associations between birth defects and exposures that have helped families across the U.S. When our son David was born missing his right hand, every time we went to a doctor, they would ask, “what drugs did you take during pregnancy?” I had been prescribed a drug for morning sickness and had other medications for discomforts during pregnancy. Because of these questions from my doctors, I reached out to the FDA and was told to utilize the recently enacted Freedom of Information Act to request documents on the medications I had taken. Through this, we learned that one of these drugs was a commonly used morning sickness medication that was associated with birth defects in numerous “adverse reaction” reports. The majority of these reports were like David’s birth defects, partially missing limbs. Because of our work linking this medication to birth defects, it was taken off the worldwide market. We have also worked on a variety of other research projects linking birth defects to specific exposures, including in the children of Vietnam veterans and Gulf War veterans who had toxic exposures during military service. The data we have collected helped support the passage of Public Law 114-315, which has provisions to study the links between birth defects and veterans’ exposure to toxins during military service. “I have known and worked with Betty and the Birth Defect Research for Children since the early 1990’s,” Bill Lewis explained. “In my role as Executive Director of the New Jersey Agent Orange Commission, a state agency, we worked with Betty and her group to establish a national registry of children of Vietnam Veterans. I was honored to be with her when we jointly presented our data to the National Academy of Sciences.” We certainly didn’t do all of this alone. We have worked with scientists, state commissions, veterans’ groups, community advocacy groups, and concerned families. There is no other project like the National Birth Defect Registry, and it is supported entirely by the public. The registry works by numbers, and the more cases we have, the more we will learn and the more birth defects we can prevent. So fewer families will have to ask, “Why My Child?”