Health Indicator Report of Birth Defects: Infant Mortality
Compared to other newborns, infants with birth defects are at a much greater risk of dying early in life. Such increased risk, combined with the frequency of birth defects, explains why birth defects are a major driver of overall infant mortality in developed countries, including the United States. Currently, birth defects are the leading cause of infant mortality in the United States. Most children who die with birth defects do so early in life, many in the first month and most before their first birthday. Thus, indicators related to infant mortality (mortality in the first year of life) currently tend to capture many (but not all) of the deaths associated with birth defects. This situation will likely change as treatment improves and survival lengthens. Still, infant mortality associated with birth defects is a useful metric to raise awareness on the impact of birth defects and to track trends reflecting the effectiveness of primary prevention and treatment. Preventing birth defects is a crucial and necessary step to improving children's survival and health. Preventing birth defects requires a combination of surveillance, to track and assess these conditions; research, to find their causes; and direct prevention services, to ensure that all women and their providers know of effective primary prevention already available, such as periconceptional folic acid to prevent neural tube defects (see Indicator Report on neural tube defects).
Infant Mortality: Distribution of Infant Deaths Associated with Birth Defects by Race/Ethnicity, Utah, 1999-2011
NotesHispanic persons may be of any race.
Data SourceUtah Birth Defect Network
DefinitionInfant mortality related to birth defects in live born infants of Utah residents that died within the first year of life.
NumeratorNumber of live born infants with major birth defects as reported to the Utah Birth Defect Network (UBDN), born during the year to Utah resident mothers and who died within the first year of life.
Denominator1) number of live born infants with birth defects born to Utah residents during the year 2) number of live born infants (with and without birth defects) born to Utah residents during the year. *This changes depending on the graph.
Healthy People Objective MICH-1.6:Infant deaths related to birth defects (all birth defects)
U.S. Target: 1.3 infant deaths per 1,000 live births
Other ObjectivesThe Healthy People 2020 objective for infant deaths related to birth defects is targeting a 10% improvement (1.3 infant deaths per 1,000 live births) over the 2006 baseline of 1.4 infant deaths related to birth defects per 1,000 live births in the U.S.
How Are We Doing?In Utah, infant mortality associated with birth defects was 1.6 per 1,000 live births for 1999-2011. The overall infant mortality in the same period was approximately 5 per 1,000 (see related IBIS indicators), indicating that birth defects are associated overall with 3 in 10 infant deaths statewide (1.6 per 1,000 / 5 per 1,000). In 2007, the infant death rate was at its highest, 1.9 per 1,000 live births. By 2011 this rate decreased slightly to 1.5 infant deaths per 1,000 live births (based on all birth defects monitored by the Utah Birth Defect Network). During 1999-2011, infant mortality among babies with birth defects was 73.9 per 1,000 (approximately 74 infant deaths per 1,000 infants with birth defects). This is 14 times higher than the overall infant mortality in Utah (5 per 1,000 live births). There was little variation in the infant mortality associated with birth defects among Utah's racial and ethnic populations. Rates were similar among White, Asian/Pacific Islanders, Native American, and Hispanic Utahns; affected births among Black Utahns were few, resulting in statistically unstable estimates. The infants with birth defects who died during the first year of life had one or more of the following major conditions: congenital heart defect (51%); chromosomal or genetic conditions (25%); genitourinary (e.g., kidney) abnormality (18%); orofacial cleft (13%); gastrointestinal abnormality (7%) neural tube defect (7%) and/or a limb defect (7%). The first 28 days of life are critical for babies with a birth defect. Of those babies in Utah with a birth defect that died during their first year of life, 71.4% died within the first 28 days of life.
How Do We Compare With the U.S.?The data from Utah are consistent with the general pattern observed in the United States as a whole and in other developed countries, in that birth defects contribute to a substantial proportion (between a quarter and a third) of all infant deaths. Because Utahns as a group have a high birth rate (the highest in the nation) and large family size, on average a family in Utah has a higher chance compared to other states and countries to have and to experience the loss of a child with birth defects. This highlights the impact of birth defects on families in Utah, and underscores the need for a concerted effort to improve primary prevention and treatment of these conditions.
What Is Being Done?With improvements in the control and treatment of infection and prematurity, the relative impact of birth defects on infant mortality is likely to increase over time, unless known primary prevention strategies are implemented and others are found. Surveillance, research, and primary prevention services are keys to reducing infant mortality due to birth defects. For surveillance, the UBDN currently contributes to tracking and assessing impact, trends, and disparities related to major structural birth defects overall, and their related mortality. In research, UBDN and University researchers are searching for the causes of birth defects in collaboration with and with funding from the U.S. Centers for Disease Control and Prevention (CDC). And for primary prevention, UBDN has been and is currently engaged in activities 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. Another important focus is support for families who have experienced the death of an infant. Organizations that offer resources and support to families who have experienced the death of an infant include the SHARE Pregnancy and Infant Loss Support, Inc. (www.nationalshare.org), The Compassionate Friends, Inc. (www.compassionatefriends.org), and Bereaved Parents of the USA (www.bereavedparentsusa.org). SHARE Pregnancy and Infant Loss Support provides support towards positive resolution of grief experienced by a family following the death of a newborn baby. Their local chapter in Utah has meetings in Salt Lake, Davis, Weber, and Cache Counties on a regular basis. The Compassionate Friends is a national non-profit organization that seeks to help families positively resolve their grief following the death of a child of any age and provides information to help others be supportive. The local Salt Lake Chapter holds bi-monthly meetings in Salt Lake City, and monthly meetings are held in Brigham City, Santaquin, St. George, and Ogden. Bereaved Parents of the USA offers support, understanding, encouragement, and hope to other bereaved parents, siblings, and grandparents after the death of their child, brother, sister, or grandchildren. Each web site has an extensive list of suggested readings for families. The National Birth Defects Prevention Network (NBDPN) is 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. (www.nbdpn.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