Birth Defect Research for Children, Inc.

Hundreds of thousands of children are suffering. Missing limbs, damaged hearts, facial deformities, Downs, autism, ADHD. We're a lifeline for families struggling with birth defects and developmental disabilities.

Why do we exist?

Each year, over 150,000 children are born with major birth defects. When a family has a child with a birth defect, they feel isolated and confused.  Birth Defect Research for Children (BDRC) is there to help them with reliable information about their child's birth defects and connections to support resources and networks of families who have children with the same disorders. Every family who has a child with a birth defect asks, "Why did this happen?"  BDRC also offers parents the opportunity to participate in research to discover the unknown causes of birth defects.  BDRC sponsors the country's only National Birth Defect Registry which collects data that is being used by researchers for studies and communities for advocacy on toxic cleanup.  BDRC has also developed a birth defect prevention project, The Healthy Baby Resource, which gives families the information they need to have healthier babies.

What have you accomplished?

Information:  Tammy was only four months pregnant when she learned through an ultrasound that her baby would be born with a bilateral cleft lip and palate.  She was frightened and didn't know where to turn for help until someone referred her to BDRC.  We provided Tammy with information about cleft lip and palate; connected her with support resources and helped her locate a cleft palate team to take care of her baby as soon as he was born. Tammy said that our information and support helped her through one of the most challenging times of her life.  Today, her son is doing great and Tammy has started a cleft palate support group with some of the local parent matches she received from BDRC. Each year, Birth Defect Research for Children provides thousands of families like Tammy’s with information and support to help them survive the challenges of raising a child with birth defects.

Parent Matching:

Lynn's baby was born with rare and serious heart defects.  Through BDRC's parent matching program, she met another parent whose baby had the same cardiac disorders.  Lynn and this mom have now become best friends.  They have even agreed to adopt each other's children if anything should happen to one of the moms.  Lynn said, "Nobody knows what it is like to raise a child with such serious heart defects more than another mom whose child has the same problems." The number of parents and childhood conditions in BDCR’s National Parent Matching database is growing each day making it possible for parents to find matching families who have children with even the rarest conditions.

Research:

A grandmother from Tennessee contacted BDRC because she was concerned about the high number of cleft palate cases in her county.  Through the National Birth Defect Registry, we were able to collect the data to confirm a cluster of cleft palate cases associated with chemicals leaking into the community water supply from an old land fill.  Because of this work, the landfill has now been covered; the source of community water has been moved away from the landfill and community residents have been warned not to drink untested well-water. This is just one example of how the National Birth Defect Registry has helped identify the possible causes of preventable birth defects. Data from BDRC’s National Birth Defect Registry is also being used by the University of Texas for a study of birth defects in the children of Gulf War veterans.  A New Jersey Agent Orange Commission evaluated data from the registry that found a pattern of birth defects and disabilities in the children of Vietnam Veterans and a division of the National Institute of Occupational Safety and Health used registry data to study an increase in a birth defect in an industrial setting.

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