Definition

Infant mortality associated with (or related to) birth defects in live born infants of Utah residents that died within the first year of life.

Numerator

Number 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 (<366 days).

Denominator

Number of live born infants born to Utah resident mothers regardless of where they occurred.

Why Is This Important?

Birth defects are one of the leading causes of infant mortality in Utah and the United States. Utah Birth Defect Network Website[[br]] [https://familyhealth.utah.gov/cshcn/ubdn/] Environmental Public Health Tracking Specific Utah Birth Defect Data[[br]] [https://ibis.utah.gov/epht-view/topic/BirthDefects.html]

How Are We Doing?

Birth data from 1999 to 2021 shows the average number of infant deaths per year associated with birth defects was 73.9. The average infant mortality rate associated with birth defects was 1.5 deaths per 1,000 live births. 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, most died within the first 28 days of life. Additional information about infant mortality is available at [https://ibis.utah.gov/ibisph-view/indicator/view/InfMort.html]

How Do We Compare With the U.S.?

Utah data is consistent with the general pattern observed in the United States, in that birth defects contribute to a substantial proportion (approximately 30%) of all infant deaths. The average rate of infant mortality associated with birth defects (1.5 deaths per 1,000 live births) is slightly higher than the target of 1.3 deaths per 1,000 live births set by Healthy People Objectives. Data available as of 2024 shows the rate of infant deaths associated with birth defects in Utah was lower than the HP target at 1.1 deaths per 1,000 live births.

What Is Being Done?

The Utah Birth Defect Network (UBDN) is a statewide population-based surveillance system that monitors major structural birth defects of all pregnancy outcomes (live births, stillbirths, and terminations) among Utah resident women. The mission of the Utah Birth Defect Network is to prevent birth defects and secondary disabilities by monitoring occurrence, referring to services, facilitating research, and providing education and outreach to children and families in Utah. The UBDN is a program under the Office of Children with Special Healthcare Needs, Division of Family Health, Utah Department of Health and Human Services. Surveillance, research, birth defect prevention, and referral to services are keys to reducing infant mortality associated with 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. For research, the UBDN collaborates with researchers locally, nationally, and internationally to help improve scientific knowledge on birth defects and to contribute to the development of evidence-based interventions that reduce the risk of birth defects and their associated negative health outcomes. For birth defect prevention, the UBDN works with Utah communities to provide information and resources on how to reduce the risk for birth defects through engaging in healthy lifestyles, avoiding environmental hazards, and talking with healthcare providers. For a referral to services, the UBDN aims to help families with children with birth defects identify and access resources in their community. The UBDN has partnered with the Utah early intervention program (Baby Watch Early Intervention Program) which provides services and support for children with developmental delays and disabilities from 0 to 3 years old. The UBDN is a member of 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 ([http://nbdpn.org/]).

Available Services

Angel Watch[[br]] Phone (801) 698-4486[[br]] Email angelwatch@imail.org [[br]] [https://intermountainhealthcare.org/services/women-newborn/resources/angel-watch/] [[br]] Angel Watch provides support and counseling service free of charge to families who receive a possibly lethal diagnosis for their unborn baby. Division of Medical Genetics[[br]] Department of Pediatrics[[br]] University of Utah Health Sciences Center[[br]] Phone (801) 581-8943[[br]] [https://medicine.utah.edu/pediatrics/genetics/]

Data Source

Utah Birth Defect Network

References and community resources

Utah Birth Defect Network [[br]] Toll Free (866) 818-7096[[br]] [https://familyhealth.utah.gov/cshcn/ubdn/] Utah Parent Center & Family to Family Network[[br]] Phone (801) 272-1051[[br]] Toll Free (800) 468-1160 voice or TDD[[br]] Espanol (801) 272-1067[[br]] [http://www.utahparentcenter.org] Utah Family Voices - Family to Family Health Information Center[[br]] Phone (801) 272-1068[[br]] Toll Free (800) 468-1160[[br]] [https://utahparentcenter.org/projects/ufv/] SHARE Parents of Utah[[br]] Phone (801) 272-5355[[br]] [http://www.shareparentsofutah.org/][[br]] A Utah pregnancy and infant loss support group. The Compassionate Friends, Inc.[[br]] [http://www.compassionatefriends.org]