Birth Defect Prevention and Surveillance

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.

How common are birth defects?

About one in every 33 babies is born with a birth defect. Every four and a half 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 (three percent of all births). Birth defects are the second leading cause of all infant deaths in Wisconsin. This results in roughly 80 deaths per year. There is around $386 million annually in birth defect-associated hospitalization costs.

What can be done to help prevent birth defects?

Birth defects are conditions that occur before or at the time of birth. A birth defect may affect a child’s health or development. The child may need special medical care or therapy as a result. While we do not know what causes all birth defects, we do know that there are things that can decrease the chances of birth defects.

• Take 400 micrograms (mcg) of folic acid every day at least one month prior to getting pregnant.
• Get up to date on vaccinations and prevent infections.
• Plan a visit with your health care provider to discuss your overall health and talk about medications you take.
• Avoid harmful substances, such as alcohol, tobacco, and other drugs.
• Care for your whole self through exercise, healthy diet, and mental health care.
• If you, your partner, or someone in your families has a birth defect, you may want to see a genetic counselor.

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.

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 health care 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 (Centers for Disease Control and Prevention).

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.

The WBDR is mandated by Wis. Stat. § 253.12, executed in May 2000, to collect demographic, diagnostic, and identifying information on children from birth to 2 years of age who are born with specified birth defects. Physicians and pediatric specialty clinics are mandated reporters.

There are many ways to define birth defects and thousands of different birth defects, but the Wisconsin Birth Defects Registry uses the definition outlined in statute. Wisconsin Stat. § 253.12(1)(a) defines a birth defect as a structural deformation, disruption or dysplasia or a genetic, inherited, or biochemical disease that occurs prior to or at birth and that requires medical or surgical intervention or interferes with normal growth and development. A list of reportable conditions can be found on the paper reporting form, F-40054 (PDF) and on this informational publication, P-03419 (PDF).

The WBDR collects information on 64 birth defects. The list of reportable birth defects was established based on the following criteria:

• Conforms to the statutory definition of a 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.

The list of reportable conditions, P-03419 (PDF) is developed by the Council on Birth Defect Prevention and Surveillance. The criteria used to develop the list are as follows:

• Conforms to the statutory definition of a 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.

The information may be used to:

• Estimate the rate of some birth defects.
• Alert the Department of Health Services to any changes in birth defect rates.
• Investigate any suspected cluster of birth defects in a geographic area.
• Inform policy and planning purposes.
• Refer children and families to services.
• Study how to prevent birth defects.

A parent or guardian can choose to have names and addresses of the child and parents or guardians removed from WBDR at any time. The parent or guardian can complete Form F-40054A and return it to the reporting hospital, clinic, or provider where the child’s birth defect was diagnosed or treated. The organization will remove the names and addresses from WBDR and save a copy of the form.

WBDR is in the Wisconsin Electronic Disease Surveillance System (WEDSS), which is a secure web-based system. Access to WBDR is restricted. All reporters who use the website must review the WBDR Security and Confidentiality Policy document and sign a user agreement. Reporters with access can only see their cases.

Email dhswbdr@dhs.wisconsin.gov with questions.

According to Wis. Stat. § 253.12, physicians and pediatric specialty clinics who diagnose and/or treat a child under the age of two with a birth defect are mandated to report on birth defects. Health care systems and hospitals may report on behalf of physicians and/or pediatric specialty clinics they are affiliated with.

There are a few ways that reports can be submitted in the WBDR:

• A paper form, F-40054 (PDF) may be submitted.
• Reports can be entered one at a time directly into WBDR.
• Multiple reports may be uploaded at the same time into a secure website.
• All reporters who use the website must review the WBDR Security and Confidentiality Policy document and sign a user agreement. Reporters can only view reports submitted by their organization.

At this time, no, WBDR cannot accept birth defects reporting directly from a hospital’s electronic patient records system. Although, health systems can work with their information technology staff to pull the required data points out of their system and into WBDR. WBDR staff can work with health systems to set up this report and support procedure development on regular reporting into WBDR.

It is more efficient to delegate one staff person at the hospital or health system to report directly into WBDR or to work on developing a report with information technology to report on behalf of all the providers. However, if you would prefer your physicians do it individually, that is perfectly appropriate, and they should contact dhswbdr@dhs.wisconsin.gov to request access.

Please reach out to the WBDR state administrator at dhswbdr@dhs.wisconsin.gov.

You have to log in and change your password at least once every three months. If you are unable to log in, you will need to reach out to the WBDR state administrator at dhswbdr@dhs.wisconsin.gov.

Wisconsin Stat. § 253.12 requires physicians and pediatric specialty clinics who diagnose and/or treat a child under the age of 2 with birth defects. A child born at home would be reported to WBDR when they are transferred to a specialty and/or pediatric provider.

If a provider at a birthing hospital has diagnosed a birth defect or is providing treatment for a birth defect on a baby or child under age 2, they should report the case to WBDR. The WBDR state administrator works to removed duplicated reports.

If the birth defect was never present, contact the WBDR administrator (dhswbdr@dhs.wisconsin.gov) who will delete the report. If the diagnosis changes, the reporter should enter WBDR and edit the original record to accurately reflect the current diagnosis.

No, however, Wis. Stat. § 253.12 mandates that that state provide information about available referral services. A letter is sent to the parent or guardian sharing information about Wisconsin Wayfinder and the Children’s Resource Centers.

No, you do not need to submit another report.

No, elective terminations are not reported to the WBDR.

Yes, stillbirths are captured in WBDR if the fetus is 20 weeks gestation or older and a reportable condition is diagnosed. Miscarriages that occur before 20 weeks gestation are not captured by WBDR. If an infant is born alive and dies after the birth, and they have a reportable condition, they should be reported to WBDR.

Yes, you need to report every case.

There are multiple opportunities in WBDR to add comments or context to the reports through text boxes and notes fields.

At any point in time, a parent or guardian can choose to have identifiers (names and addresses of the child and parents or guardians) removed from the record. Form F-40054A must be completed and returned to the reporting organization (hospital, clinic, or provider). If the form is completed prior to the case being reported in WBDR, the identifiers should be removed at that time. If the form is completed after the report has been made, the hospital, clinic, or provider should go into WBDR to remove the identifying information and will save a copy of the form.

Yes, if a baby was diagnosed and/or treated for a birth defect in a Wisconsin, the diagnosing or treating provider is required to report into the WBDR.

Yes, if a child is under two years of age and being treated for a birth defect in Wisconsin, the treating provider is required to report it into the WBDR.

No, treating and/or diagnosing providers that do not work in Wisconsin are not required to report into the WBDR.

WBDR 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

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

Reports can be submitted a few ways in the WBDR:

• A paper form, F-40054 (PDF) 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, contact the WBDR state administrator, Melissa Olson, in the Bureau of Community Health Promotion to gain access to WBDR.

• Wisconsin Birth Defects Registry Letter to Families (PDF), (English)
• Wisconsin Birth Defects Registry Letter to Families (PDF), (Hmong)
• Wisconsin Birth Defects Registry Letter to Families (PDF), (Spanish)
• Wisconsin Birth Defects Condition Nomination, P-02541, (English and Spanish)
• Wisconsin Birth Defects Registry Information for Families, P-02147, (Multiple Languages)
• Wisconsin Birth Defects Registry Information for Providers, P-02147A (PDF)
• Wisconsin Birth Defects Registry Paper Form, F-40054 (PDF)
• Wisconsin Birth Defects Registry User Agreement, F-40056 (PDF)
• Wisconsin Birth Defects Registry Security and Confidentiality Policy, P-40078 (PDF)
• Wisconsin Birth Defects Registry Parent/Guardian Request to Remove Identifiers Form, F-40054A, (Multiple Languages)

• The CDC's What are Birth Defects?
• National Birth Defects Prevention Network
• Wisconsin Department of Health Services, Environmental Public Health Tracking