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Birth Defects and Infant Mortality in Utah

Why Is This Important?

Compared to other newborns, infants with birth defects are at a several-fold higher risk of dying early in life. Because of this, birth defects are a major driver of overall infant mortality in a state. Currently, birth defects are the leading cause of infant mortality in the United States and other developed countries.

Most children who die of birth defects do so early in life, many before their first month and most before their first year of life. Thus, infant mortality due to birth defects is a reasonable and convenient measure of deaths due to birth defects and of the effectiveness of 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 section on neural tube defects).

Tracking birth defect patterns among Utah women is crucial in our efforts to understand the impact of birth defect related infant mortality and to decrease the number of infants that die during their first year of life.

It is also important that families have the resources to help them in the difficult times following the tragic loss of their child with birth defects. The Utah Birth Defect Network (UBDN) is engaged in activities to help prevent birth defects through surveillance and services, as well as to provide resource information to families who have experienced the death of a baby and their providers

How Are We Doing?

During 1999-2003, infant mortality among babies with a birth defect was 78 infant deaths per 1,000 affected infants. This is more than 15 times higher than the overall infant mortality in Utah, which is approximately 5 infant deaths per 1,000 live born infants. Thus, even if only 3 in 100 babies are born with a birth defect, they contribute to 3 in 10 infant deaths in Utah (1.5 of the 5 infant deaths per 1,000 live births). There was little variation among Utah's racial and ethnic populations.

The first 28 days of life are critical for babies with a birth defect. Of those babies with a birth defect that died during their first year of life, 75% died within the first 28 days of life.

Two of every three infant deaths (66%) among babies with birth defects were due to one of five major conditions: a chromosomal or genetic condition (28.9%); a congenital heart defect (22.3%); a kidney abnormality (5.8%); skeletal abnormalities (5.6%); or a neural tube defect (3.6%).

How Does Utah 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 experience the loss of a child with birth defects. This highlights the impact of birth defects on families in the 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 birth defects-related mortality. In research, UBDN and University researchers are searching for the causes of birth defects in collaboration with and with funding from the US Centers for Disease Control and Prevention (CDC). And for primary prevention, UBDN has been and is 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.nationalshareoffice.com), 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, and Toole counties on a regular basis. The Compassionate Friends is a national nonprofit 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 weekly meetings in Salt Lake City and Ogden (see More Information below). 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

Graphics

  • Overall percent of infant mortality among live born cases of birth defects
  • Overall rate by race/ethnicity