Health Indicator Report of Birth Defects: Overall
Major birth defects are associated with significant mortality, illness, and disability throughout the lifespan. Pregnancies affected by birth defects are more likely to end as a stillbirth. Affected newborns and children are at an increased risk of premature death, chronic illness, or long term disability. In the United States and other developed countries, birth defects are the leading cause of infant mortality, and are a major contributor to pediatric hospitalizations, chronic childhood illness, and developmental disabilities. Birth defects are a crucial public health issue nationwide, but particularly in Utah, because of the state's remarkably high birth rate (the highest in the nation). Tracking and studying birth defects has several benefits: this information helps measure and monitor over time the burden of disease locally and statewide, and provides the evidence basis to help allocate resources for optimal care and evaluate prevention efforts.
All Birth Defects Prevalence, Overall and by Race/Ethnicity, Utah, 1999-2011
NotesHispanic persons may be of any race.
Data SourceUtah Birth Defect Network
DefinitionNumber of cases of eligible major birth defects per 1,000 live births and stillbirths. Major birth defects are broadly those that require medical, surgical, or rehabilitative services, and have an impact on the person's health and development. Major birth defects eligible for inclusion in the Utah Birth Defect Network (UBDN) encompass most (not all) serious structural birth defects, including common as well as uncommon anomalies of the heart (e.g., septal defects, conotruncal defects), face (e.g., cleft lip and palate), skull (e.g., craniosynostosis), limbs (e.g., missing digits), brain or spine (e.g., anencephaly and spina bifida), kidneys and genitourinary system (e.g., absent kidney, hydronephrosis, hypospadias), liver and gastrointestinal system (e.g., biliary atresia, esophageal atresia), as well as chromosomal anomalies such as Down syndrome. This report excludes certain mild conditions such as those 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).
NumeratorNumber of cases of major birth defects among live births and fetal deaths in women residing in Utah.
DenominatorNumber of live births and stillbirths among women residing in Utah.
How Are We Doing?From 1999 through 2011, the Utah Birth Defect Network (UBDN) identified 15,042 affected newborn babies. Thus, approximately 1,157 affected babies are currently born each year in the state, for a rate of 22.7 per 1,000 births or approximately 2.3 of every 100 births. This figure does not include some common, milder conditions, as noted in the definition. With a broader inclusion of structural conditions, it has been estimated that the rate of birth defects is 3%, or 1 in 33 births. By including also developmental disabilities, which become apparent often only in the older or school-age child, such rate has been estimated to exceed 10% or more of births. Clinical review at UBDN of over 15,000 affected babies born from 1999 through 2011 has shown that 17.1% had identifiable genetic basis (chromosomal or single gene), and 0.4% had an environmental basis (including teratogens and maternal conditions such as uncontrolled diabetes). A small fraction was due to other known factors including twinning (0.3%). In the remaining 82.3% of cases, the cause remained unknown. Review of UBDN data shows that major birth defects in Utah are associated with 1.6 infant deaths per 1,000 live born infants, or approximately 30% of the total infant deaths in the state (5 per 1,000). Birth defects also disproportionately contribute to prematurity. In 2011, over 21% of babies born with birth defects in Utah were premature, compared to 9.5% of all babies born. Because of the efforts toward statewide folic acid education since 1995 through 2000 and national flour fortification in 1998, the UBDN had demonstrated a 50% reduction in neural tube defects. Since 2003, however, Utah rates of neural tube defects have increased. In contrast, oral facial clefts (cleft lip with and without palate, and cleft palate alone), which are among the highest reported, remain consistently high at 1 in 480 births (1995-2011; see Indicator Report on orofacial clefts).
How Do We Compare With the U.S.?Overall comparisons of birth defect rates with the U.S. must be interpreted with caution because variations in selection, ascertainment, and reporting of birth defects in different states may create spurious differences (or obscure true differences) in birth defect occurrence. Some data from other states are available from the National Birth Defects Prevention Network (NBDPN) and are available on its website (www.nbdpn.org). The overall rate of birth defects in Utah is generally in line with what is expected based on national and international experience. A common overall estimate of the birth defect rate is 3%, or 1 in 33 births. The slightly lower figure observed in Utah (2.3%, or 1 in 45 births) can be explained by the exclusion of certain common and mild defects from ascertainment by the UBDN. Overall, rates for specific birth defects are similar to that observed in programs with similar operating methods (e.g., the California Birth Defects Monitoring Program, the Metropolitan Atlanta Congenital Defects Program) with a two major differences. One difference is the rate of Down syndrome that is somewhat higher in Utah than in other parts of the U.S. (see Indicator Report on Down syndrome), and that is consistent with the reproductive patterns in Utah whereby a comparatively higher proportion of pregnancies occur in the later childbearing years than in other states. A second difference is the high rate of cleft lip and palate, which currently exceeds 1 in 500 births, and is higher than in other parts of the U.S., for reasons that are yet clear (see Indicator Report on orofacial clefts). No differences were observed between the maternal race/ethnicity specific prevalence estimates. However, women 35 years of age and older had a higher overall prevalence for birth defects (30.9 per 1,000 births) compared to women less than 35 years of age (22.1 per 1,000 births).
What Is Being Done?Since 1994, Utah Birth Defect Network (UBDN), a program of the Utah Department of Health and the University of Utah's Department of Pediatrics, has been committed to providing quality information for tracking, assessing, and preventing birth defects. The UBDN, in partnership with local and national organizations, is 1) tracking all major birth defects to assess trends, address community concerns, examine clustering, and quantify morbidity and mortality; 2) promoting and evaluating primary prevention of severe birth defects, including education campaigns among women and health care providers to promote the use of the B-vitamin folic acid to prevent spina bifida and other neural tube defects; and 3) as part of the National Birth Defects Prevention Study, searching for the causes of birth defects in collaboration with and with funding from the U.S. Centers for Disease Control and Prevention (CDC). The UBDN is also active nationally within the National Birth Defects Prevention Network (NBDPN), a non-profit organization involving birth defect programs and individuals working at the local, state, and national level to raise awareness for birth defects. The NBDPN is committed to the progression of surveillance and research, to identify factors for prevention and assist families to minimize secondary disabilities prevention. (For more information, see www.nbdpn.org) Specific services for families of affected children from birth to three years of age are provided by the Baby Watch Early Intervention Program, located within the Bureau of Child Development, Utah Department of Health. Services include child health assessment; service coordination among providers, programs, and agencies; occupational and physical therapy; and speech and language therapy. Information on these services is available at www.utahbabywatch.org. Another resource is the Utah Collaborative Medical Home, which is a project designed to provide information, tools, and resources for primary care physicians to enhance their ability to care for children with special health care needs. Information on the Utah Collaborative Medical Home is available at their web site: www.medicalhomeportal.org.
Available ServicesChildren with Special Health Care Needs 44 N Mario Capecchi Drive PO Box 144610 Salt Lake City, UT 84114-4610 Phone (801) 584-8284 Toll Free (800) 829-8200 http://health.utah.gov/cshcn CSHCN provides services for children who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition. Division of Medical Genetics Department of Pediatrics University of Utah Health Sciences Center 2C412 School of Medicine 50 N Mario Capecchi Drive Salt Lake City, Utah 84132 Phone (801) 581-8943 Baby Watch Early Intervention Services 44 N Mario Capecchi Drive PO Box 144720 Salt Lake City, Utah 84114-4720 Phone (801) 584-8226 Toll Free (800) 961-4226 www.utahbabywatch.org Statewide EI services are available for families of affected children from birth to three years of age that include child health assessment, service coordination among providers, occupational and physical therapy, and speech and language therapy.
Page Content Updated On 10/28/2014, Published on 12/01/2014