Birth Defect Prevention and Surveillance
A birth defect is a problem that happens while the baby is developing in the parent’s body. A birth defect may affect how a baby’s body looks, works, or both. Approximately one out of every 33 babies is born with a birth defect.
Wisconsin Stat. § 253.12 defines a birth defect as a structural deformation, disruption, or dysplasia or a genetic, inherited, or biochemical disease.
The Wisconsin Birth Defect Prevention and Surveillance Program is responsible for implementing Wis. Stat. § 253.12 which was enacted in May 2000. This statute calls for the establishment of a confidential birth defects registry comprised of birth defects found in children from birth to two years of age who are diagnosed or treated in Wisconsin by a physician, pediatric specialty clinic or hospital. Reportable conditions occur prior to or at birth and require medical/surgical intervention or interfere with normal growth and development.
About one in every 33 babies is born with a birth defect. Every 4 ½ minutes, a baby is born with a birth defect in the United States. In Wisconsin, nearly 2,000 babies are born with a birth defect each year.
People who want to learn more about their risk of having a baby with a birth defect and ways to prevent birth defects can talk with a genetics counselor or their health care provider.
Learn more about birth defects from the CDC (Centers of Disease Control and Prevention).
We do not know what causes most birth defects. Sometimes they just happen and are not caused by anything that the parents did or didn’t do.
While we don’t always know what causes a birth defect, we do know some things can decrease the chances of a birth defect happening.
- Be sure to take 400 micrograms (mcg) of folic acid every day at least one month prior to conception.
- Plan a visit with your healthcare provider to support a healthy pregnancy.
- Reduce your risk of infections.
- Care for your body and mind before and during pregnancy to set you and your baby up for success.
- Avoid harmful substances during pregnancy, such as alcohol, tobacco, and other drugs.
Learn more about healthy choices to help prevent birth defects from the CDC.
Birth defects happen before a baby is born. Most birth defects happen in the first three months of pregnancy, when the organs of the baby are forming. This is the most important stage of development. However, some birth defects happen later in pregnancy. During the last six months of pregnancy, the tissues and organs continue to grow and develop.
- Council on Birth Defect Prevention and Surveillance
- Wisconsin Birth Defects Registry (WBDR)
- Wisconsin Department of Health Services, Environmental Public Health Tracking
A registry collects disease-based or exposure-based data on individuals from a defined population. It is a tool for surveillance and research to better understand the disease or exposure of interest. A registry can help identify:
- Disease prevalence estimates
- Geographic distribution
- Risk factors and demographics
- Trends over time
Wisconsin Birth Defect Registry (WBDR) was developed in 2000. It conducts surveillance through passive case ascertainment. Pediatric specialty clinics and physicians who diagnose the birth defect or provide treatment to the child for the birth defect are required by Wis. Stat. § 253.12 to report information to the registry. Any hospital in which a birth defect is diagnosed is allowed to report the birth defect.
Wisconsin requires reporting on 64 birth defects. The list of reportable birth defects was established based on the following criteria:
- Conforms to the statutory definition of birth defect
- Is usually identifiable by two years of age
- Is a major anomaly (having medical, surgical, or developmental significance)
- Occurs with sufficient frequency (one in 30,000 births). In Wisconsin, this is about two cases per year.
- Is likely to be ascertained through assessment in one or more specialty clinics
There are a few ways that reports can be submitted in the WBDR:
- A paper form, F-40054 may be submitted.
- An approved reporter may enter reports one at a time on a secure website.
- A reporting site may upload multiple reports from their electronic patient record system to the secure website.
Note: All reporters who use the website must sign a user agreement and are given a copy of the WBDR Security and Confidentiality Policy document. Reporters can only view reports submitted by their organization.
If you have any questions, please contact the WBDR state administrator, Melissa Olson, in the Bureau of Community Health Promotion to gain access to WBDR.
- Wisconsin Birth Defects Registry Information for Families, P-02147, Multiple Languages)
- Wisconsin Birth Defects Registry Information for Providers, P-02147A
- Wisconsin Birth Defects Registry Paper Form, F-40054
- Wisconsin Birth Defects Registry User Agreement, F-40056
- Wisconsin Birth Defects Registry Security and Confidentiality Policy, P-40078
- Wisconsin Birth Defects Registry Parent/Guardian Request to Remove Identifiers Form, F-40054A, Multiple Languages
Kaitlin Tolliver, Program Coordinator
Melissa Olson, Program Epidemiologist
Looking for more assistance? Wisconsin has five Regional Centers for Children and Youth with Special Health Care Needs that can help families get answers, find services, and connect with community resources. Their services are free and private.