Children and Youth with Special Health Care Needs
Birth Defect Prevention and Surveillance System
What are birth defects?
According to the March of Dimes, more than 4,500 different birth defects have
been identified and, together, they cause more than 20% of all infant deaths in
the United States. Birth defects can affect any organ or body system and they
are sometimes difficult to identify. While some birth defects may be easily
observable - like a missing or malformed limb - others may be very difficult to
recognize, such as a rare metabolic disorder or an internal malformation. Birth
defects may become evident at different times - during pregnancy, at birth, in
early childhood, or even later in life. Birth defects may be caused by many
things: genetic errors, toxic substances, drugs or medications, environmental
influences, infections during pregnancy, physical injury to the baby before
birth, or by unknown causes. In fact, about two thirds of birth defects have no
What is the effect of birth defects?
Birth defects can cause relatively minor problems, such as an extra finger or
a skin birthmark, or major problems, such as severe mental retardation, abnormal
growth and development, or death. The majority of infant deaths due to birth
defects are caused by heart, respiratory, nervous system, or chromosomal
In Wisconsin, approximately 2,000 infants are born with a birth defect each
year, impacting 3% of all births. Birth defects are a substantial cause of
childhood morbidity and long-term disability and are the fifth leading cause of
years of potential life lost. Birth defects are also expensive. In Wisconsin,
the estimated lifetime cost of birth defects for infants born in a given year
exceeds $140 million.
Wisconsin Birth Defects Registry - Why is it necessary?
To prevent birth defects, we need to know more about what causes them. To
identify causes, we need to know the frequency of individual birth defects and
we need to compare the occurrence of specific birth defects to the presence of
potential causative factors.
The Wisconsin Birth Defects Registry (WBDR), established in 2004, is intended
- Collect epidemiological data that will make it possible to estimate
Wisconsin-specific frequency of birth defects occurrence and geographical
- Identify possible environmental causes or environmental triggers.
- Formulate prevention strategies as illustrated by recent national research
that tied folic acid supplementation to the prevention of neural tube
- Allow tracking of apparent birth defect clusters that may occur
geographically, racially/ethnically, or by environmental risks. Alternately,
complete data can identify false clusters and provide reassurance regarding
- Contribute to development of policy and programs regarding current or
future need for services.
- Provide families appropriate information and referral to services.
For more information on birth defects:
April 16, 2014