Information for Families
Birth defects can occur during any stage of pregnancy. Most birth defects, including congenital heart defects and spina bifida, occur in the first three months of pregnancy when organs like the heart and spine are developing. This is a very important stage of development. Some birth defects occur later in pregnancy.
About one in every 33 babies is born with a birth defect. Birth defects are the leading cause of infant death, and infants with birth defects have a greater chance of illnesses and long-term disabilities than those without birth defects. Lifetime costs to care for a person with a birth defect can be more than $500,000. View information about specific birth defects from the Centers for Disease Control and Prevention.
Most birth defects are caused by a complex mix of factors. These factors include our genes, our behaviors, and things in the environment. Researchers have not identified the cause of most birth defects.
The following factors can increase the chance of having a child with a birth defect:
- Taking certain drugs, smoking, or drinking alcohol at any point during pregnancy.
- Having certain medical conditions, such as uncontrolled diabetes or obesity before and during pregnancy.
- Taking certain medications that are known to cause birth defects. If you take any medications (over-the-counter or prescription), consult with your doctor to learn the best treatment options for both you and your baby.
- Having someone in your family with a birth defect. To learn more about your risk of having a baby with a birth defect because of family history, you can talk with a clinical geneticist or a genetic counselor.
- Giving birth over the age of 35 years.
- View Data about major birth defects reported in New York State and learn more about specific types of birth defects.
Planning to Become Pregnant?
Follow these healthy habits early for a healthy baby:
- Have regular medical checkups.
- Eat healthy foods and maintain a healthy weight.
- Make sure that medical conditions, like diabetes, are under control.
- Take a vitamin with folic acid every day.
- Have tests for infectious diseases and get necessary vaccinations.
- Wash your hands often to avoid getting sick.
- Talk with your doctor about any medications you are taking or thinking about taking, including prescription and over-the-counter medications and dietary or herbal products.
- Don't smoke, drink alcohol, or use street drugs.
- Avoid exposure to toxic secondhand smoke, chemicals, and fumes.
- Avoid changing/cleaning kitty litter boxes.
- Avoid x-rays and other radiation.
- Avoid consuming specific foods that may increase risk of harm to your developing baby, like raw or undercooked meats and fish, certain types of fish and shellfish, and cold cuts.
- Learn ways to reduce your risk of cytomegalovirus (CMV).
Resources for Families
If your baby has a birth defect, there are resources and support for your family.
- This Resource Directory for Children and Young Adults with Special Health Care Needs
lists services for extra health care and support needs.
- Family Support Resources seeks to improve the system of care for children with special health care needs from birth to 21 years of age and their families.
- The Early Intervention Program offers therapeutic and support services to eligible infants and toddlers with disabilities and their families.
- The Office for People With Developmental Disabilities works to further the prevention and early detection of developmental disabilities. It is responsible for coordinating services for affected populations.
- The New York State Multiple Systems Navigator is a user-friendly website with helpful health, education, human service and disability information in one place. The site was built for youth, parents, family members, and caregivers that rely on supports from multiple child and family serving systems.
- This Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) report summarizes results of research about Myotonic Muscular Dystrophy, Facioscapulohumeral Muscular Dystrophy, and Duchenne Muscular Dystrophy based on data from the Muscular Dystrophy Surveillance, Tracking and Research Network study (MD STARnet).
- Support organizations for families affected by Congenital Heart Defects include It's My Heart, Kids With Heart, and Mended Little Hearts.
- Support organizations for families affected by Neural Tube Defects include Spina Bifida Association, Spina Bifida Association of Northeastern New York, and Anencephaly Information.
- Support organizations for families affected by Cleft Lip and Cleft Palate include Cleft Palate Foundation and SMILES Craniofacial Support Group.
More Information
- View and share the brochure Striving for Healthy Births.
- Sign up for Text4Baby's free text messages or text BABY (English) or BEBE (Spanish) to 511411.
- Visit MotherToBaby for trusted, evidence-based information on the benefit or risk of medications and exposures during pregnancy and while breastfeeding.
- Contact the Growing Up Healthy Hotline at 1-800-522-5006 to get secure and confidential information about health care, nutrition and other health and human services. It’s available 24-hours a day, seven days a week in English, Spanish and other languages.
- Get information from the Centers for Disease Control and Prevention (CDC) on Birth Defects.
Information for Professionals
New York State requires hospitals and physicians to report diagnoses of particular birth defects, also known as congenital malformations, to the Birth Defects Registry, an archive for case reports of children born or residing in New York State and diagnosed before the age of two with any structural, functional or biochemical abnormality determined genetically or induced during gestation and not due to birthing events. The Birth Defects Registry monitors trends and patterns related to these birth defects and provides data for education, research, and planning in public health, leading to the understanding, prevention, and treatment of birth defects. Access to BDR information is restricted and carefully monitored so that the identity of children and families is not disclosed.
If you are interested in reviewing or using data collected by the Birth Defect Registry, please contact us at bdr@health.ny.gov.
Procedures for Reporting to the Registry
Current NYS Research Projects
The New York State Department of Health is currently working on several research projects. Researchers specializing in epidemiology, statistics, medicine, demography, and computer science are continuously working towards improving operating procedures of the Birth Defects Registry.
- The National Birth Defects Prevention Study (NBDPS) was one of the largest studies on the causes of birth defects in the United States and includes babies born between 1997 and 2011. Mothers of more than 30,000 babies with birth defects and 10,000 babies without birth defects took part in this study. Researchers continue to analyze this rich source of information on birth defects. NBDPS has made key contributions toward understanding the risk of having a baby with a birth defect when specific medications are used just before and during pregnancy. Data from NBDPS have demonstrated that mothers who are obese have a higher risk for having a baby with a number of different major birth defects. This study has also confirmed results from previous studies that found that women who smoke cigarettes during pregnancy have a higher risk of having a baby with a cleft lip, cleft palate, or both. At the same time, NBDPS has provided some reassuring information about medications that do not increase risk of birth defects.
- The Birth Defects Study to Evaluate Pregnancy Exposures (BD-STEPS) builds on birth defects research from the National Birth Defects Prevention Study. BD-STEPS focuses on risk factors that a woman may be able to modify such as diabetes, obesity, physical activity, treatments for chronic medical conditions (such as asthma or high blood pressure), treatments for infertility, and other medication use during pregnancy. BD-STEPS is being conducted in multiple regions of the United States. In New York, the study focuses on women and infants living in 14 counties in Southern and Western NY. The main part of the study involves a telephone interview with both women who have had a pregnancy affected by a birth defect and those who had babies without birth defects. Women are asked about things they did or experienced during pregnancy. Women selected to participate in the BD-STEPS will receive an invitation by mail and a call from 518-320-8282. Learn more about BD-STEPS at bdsteps.org. Email ny@bdsteps.org or call 1-888-296-8192 for more information.
- Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) is a multi-state surveillance and research effort funded by the US Centers for Disease Control and Prevention with sites in Iowa, Florida, North Carolina, South Carolina, Utah, Virginia and western New York. The major goals of MD STARnet are to improve care and quality of life for individuals living with muscular dystrophies.MD STARnet sites focus on identifying eligible cases and collecting data to estimate prevalence and survival and track key clinical indicators. This information is expected to advance understanding of diagnosis timing, disease progression, and survival; clinical care and interventions and their alignment with recommended care; disparities in access to care; the association of treatment with outcomes; and the impact of muscular dystrophies on the lives of affected individuals and their families.
- In 2019, the CDC funded six sites (University of Arizona, Duke University, Emory University, New York State Department of Health, South Carolina Department of Health and Environmental Control, and University of Utah) and in 2020 one additional site (University of Iowa) to enhance and expand public health tracking of congenital heart defects (CHDs). The goals of the Congenital Heart Defects Surveillance Across Time and Regions (CHD STAR) project include improving the health, quality of life, and continuity of care for individuals living with CHDs. The objectives of CHD STAR include identifying cases with CHDs and achieving an improved understanding of age-specific mortality, healthcare utilization, comorbidities, and outcomes across the lifespan, as well as an improved understanding of racial/ethnic and socioeconomic disparities.
Additional Resources
- The National Preconception Curriculum & Resources Guide for Clinicians – Before, Between and Beyond Pregnancy. The National Preconception Care Clinical Toolkit was designed to help primary care providers, their colleagues and their practices incorporate preconception health into the routine care of women of childbearing age.
- The National Center on Birth Defects & Developmental Disabilities. By translating science into action, they provide the credible health information consumers, health care professionals, and policymakers need nationwide to improve the lives of children and adults with disabilities, blood disorders, and birth defects.
- This Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) report summarizes results of research about Myotonic Muscular Dystrophy, Facioscapulohumeral Muscular Dystrophy, and Duchenne Muscular Dystrophy based on data from the Muscular Dystrophy Surveillance, Tracking and Research Network study (MD STARnet).
About The Birth Defects Registry (BDR)
The Birth Defects Registry (BDR) is an archive of reports of children born or living in New York State and diagnosed with birth defects. Birth defects can include any structural, functional, or biochemical abnormality determined genetically or induced during pregnancy. Hospitals and healthcare providers are required to report children born or living in New York State who have been diagnosed before two years of age with birth defects, chromosomal anomalies, or were stillborn or other non-liveborn. Certain birth defects are required to be reported for children diagnosed before ten years of age (please see Birth Defects Registry Handbook for more information).
Mission & Objectives
The mission of the BDR is to:
- Collect information on the births of infants and children with selected birth defects in New York State
- Monitor trends and patterns of prevalence, mortality, and survival rates of selected birth defects
- Provide data for education, research, and planning in public health, leading to the understanding, prevention, and treatment of birth defects
Specific objectives of the BDR include:
- Determine the annual prevalence of birth defects among New York live births
- Monitor the prevalence and type of major birth defects with regard to geographic distributions and community characteristics
- Investigate suspected increases in the prevalence of birth defects that may be associated with environmental exposures
- Conduct epidemiological studies of specific birth defects
- Respond to medical inquiries regarding birth defects
- Work with other bureaus within the NYSDOH to ensure that services and quality of care for children with birth defects are provided
- Provide data for planning, advocacy, education, and other requests
History
The BDR was developed as a result of the Love Canal crisis. In 1978, the New York State Department of Health investigated whether adverse pregnancy outcomes increased in the Love Canal area. Birth certificates obtained and used for a study of low birth weight births proved to be inadequate for the evaluation of birth defects. In the 1980s, aware of the need to collect more reliable and valid surveillance data for birth defects, the legislature enacted a bill authorizing the New York State Department of Health to require hospitals and physicians to report diseases and conditions that are designated as "environmentally related".
Confidentiality
State Health Department staff rigorously secure and protect all BDR information to protect privacy. Access to BDR information is restricted and carefully monitored so that the identity of children and families is not disclosed. The New York State Department of Health Institutional Review Board for the Protection of Human Subjects must approve any research projects. No individuals' names are identified when information is provided to communities to help them plan for services.
Questions?
Please contact us at bdr@health.ny.gov
View Birth Defects Registry Data
The Birth Defects Registry (BDR) collaborates with the New York State Environmental Public Health Tracking Program and Health Data NY to provide public access to birth defect surveillance data. These datasets present BDR data aggregated by region and time in order to maintain confidentiality. The BDR also works with New York State Vital Records and uses vital records data to calculate the prevalence of birth defects.
Request Data
If you are interested in requesting additional data, please contact us at bdr@health.ny.gov.
Annual Reports
- 25 Year Report - Statistical Summary of Children Born 1983 through 2007
- 2008 Report - Statistical Summary of Children Born in 2008 and Diagnosed Through 2010
- 2007 Report - Statistical Summary of Children Born in 2007 and Diagnosed Through 2009
- 2006 Report - Statistical Summary of Children Born in 2006 and Diagnosed Through 2008
- 2005 Report - Statistical Summary of Children Born in 2005 and Diagnosed Through 2007
- 2002-2004 Report - Statistical Summary of Children Born in 2002-2004 and Diagnosed through 2006
- 1998-2001 Report - Statistical Summary of Children Born in 1998-2001 and Diagnosed Through 2003
- 1996 Report - Statistical Summary of Children Born in 1996-1997 and Diagnosed Through 1999
- 1995 Report - Statistical Summary of Children Born in 1995 and Diagnosed Through 1997
- 1994 Report - Statistical Summary of Children Born in 1994 and Diagnosed Through 1996
