Every 4.5 minutes, a baby is born with a birth defect. Major birth defects are conditions present at birth that cause structural changes in one or more parts of the body. They can have a serious, adverse effect on health, development, or functional ability. The possible association between environmental contaminants and human health problems is an important concern throughout Utah.
The Utah Birth Defect Network (UBDN) is a statewide, population-based surveillance system that has identified birth defects in children born in Utah since 1994. The UBDN is operated by the Utah Department of Health, Division of Family Health and Preparedness, Bureau of Children with Special Health Care Needs.
Public Health Importance
- In 2011, more than 1,200 infants were born with major structural or genetic birth defects in Utah.
- In the U.S., one in 33 babies is born with a birth defect affecting about 120,000 babies each year.
- Birth defects are one of the leading causes of death in children less than one year of age - causing one in every five deaths.
- Effects of birth defects can range from mild to severe and can result in debilitating illness, long-term disability or death.
- Defects of the heart are the most common kind of birth defect and cause most of the hospitalizations.
- During 2004, hospital costs in the U.S. for birth defects totaled $2.6 billion dollars and accounted for more than 139,000 hospitalizations.
- Causes of most birth defects are unknown.
- Utahans are concerned about the possible association between birth defects and environmental contamination.
The Utah Birth Defect Network began in 1994 by monitoring neural tube defects. Additional birth defects were added in 1995 and again in 1997. With additional funding from Center for Disease Control and Prevention (CDC), the Birth Defect Network began monitoring all major birth defects in 1999.
Activities of the Birth Defect Network:
- Monitor the occurrence of birth defects in Utah
- Assess trends over time
- Address community concerns
- Examine clustering of birth defects
- Quantify morbidity and mortality
- Health services planning
- Referral for services
- Monitor intervention strategies
- Secondary prevention
- Consumer education and advocacy
- Health care provider education
Why does the Utah Birth Defect Network (UBDN) monitor birth defects in Utah?
- 81.5% of birth defect cases in Utah from 1999-2003 have no known cause.
- 1 in 4 infant deaths in Utah is attributable to birth defects.
- 1 in 50 births in Utah is affected by a birth defect tracked by the UBDN.
Tracking and studying birth defects in Utah provides the information needed to monitor the burden of disease locally and statewide, to assess services, to allocate resources for optimal care, and to evaluate prevention efforts.
Which birth defects does the UBDN track?
- All major birth defects
- Some minor defects are excluded
The UBDN tracks all major structural birth defects. However, some of the more mild conditions are not tracked due to limited resources. These mild conditions include those such as heart findings detected in the preterm baby and that often resolve over time (e.g., patent ductus arteriosus); mild conditions not leading to treatment (e.g., coronal hypospadias not needing surgery); or conditions that usually do not lead to major medical concerns except perhaps in later stages of life (mitral prolapse).
How does the UBDN monitor birth defects?
- Medical records abstraction
- Data analysis
- Reports from hospitals, labs, clinics and birthing facilities (Champion Reporting Form)
Utah administrative rule R398-5 gives the UBDN legal authority to collect information about children born in Utah with birth defects. Under this rule, all hospitals and birthing centers located in Utah are required to report a specific set of information to the UBDN any time a baby is born with a birth defect. Once the UBDN receives a report of a birth defect, a UBDN staff member goes out to the reporting facility and collects information from the medical records of the infant and the mother. The collected information is then entered into a secure database. Analysis is then performed by an epidemiologist to identify rates, trends, risk factors, and causes. The UBDN takes great care to insure the confidentiality and security of all information that is collected. All identifying information is removed from the data before analysis.
How long has the UBDN been monitoring birth defects?
- UBDN began monitoring neural tube defects (e.g. spina bifida) in 1994.
- In 1999 the UBDN expanded to collect all major structural birth defects.
In 1994, as a pilot project, the UBDN began tracking neural tube defects in Utah. In 1995 and again in 1997 additional defects were added. In 1999 the UBDN received funding from the Center for Disease Control and Prevention (CDC) to expand and collect all major structural birth defects.
Research and Data
Current Publically Available Data Reported by UBDN
- National Birth Defect Prevention Network UT State Profile
- National Birth Defect Prevention Network Annual Reports
- Birth Defect Indicator Reports: Congenital Heart Defects
- Birth Defect Indicator Reports: Down Syndrome
- Birth Defect Indicator Reports: Gastroschisis
- Birth Defect Indicator Reports: Hypospadias
- Birth Defect Indicator Reports: Infant Mortality
- Birth Defect Indicator Reports: Limb Defects
- Birth Defect Indicator Reports: Neural Tube Defects
- Birth Defect Indicator Reports: Orofacial Clefts
- Birth Defect Indicator Reports: Overall UT Birth Defects
Requests for data from the UBDN must be submitted through Utah Birth Defect Network, Bureau of Children with Special Health Care Needs, Division of Family Health and Preparedness, Utah Department of Health. firstname.lastname@example.org
"Making Healthy Choices to Prevent Birth Defects - Make a PACT for Prevention"
- Get as healthy as possible before becoming pregnant.
- Get 400 micrograms (mcg) of folic acid every day.
Avoid Harmful substances
- Avoid drinking alcohol and smoking.
- Be careful with harmful exposures at work and home.
Choose a healthy lifestyle
- Eat a healthy diet that includes fruits, vegetables, whole grain, low fat dairy, and lean proteins.
- Be physically active.
- Work to get medical conditions like diabetes or seizures under control.
Talk to your doctor
- Get a medical checkup.
- Discuss all medications, both prescription and over-the-counter.
- Talk about your family history.
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