Definition

Utah birth defect prevalence rate per 10,000 live births.

Numerator

Number of cases of specific birth defects (includes all pregnancy outcomes except spontaneous abortion (fetal demise <20 weeks)).

Denominator

Number of live births among Utah resident mothers regardless of location.

Data Interpretation Issues

Only birth defects identified in the National Birth Defect Prevention Network (NBDPN) list of recommended birth defects are reported for this IBIS indicator. For the prevalence of other birth defects, please contact the Utah Birth Defect Network (UBDN). The list of NBDPN recommended birth defects can be found here starting on page 5: [https://www.nbdpn.org/docs/Appendix_3_1_BirthDefectsDescriptions2015_2016DEC14.pdf] Please note: The UBDN does not collect club foot. In 2014, the UBDN stopped collecting primary atrial septal defects (ASDs).

Why Is This Important?

Major birth defects are associated with significant mortality, illness, and disability throughout the lifespan. 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?

With birth data from 1994 through 2021, the Utah Birth Defect Network (UBDN) has identified over 23,000 pregnancies affected by at least one major birth defect collected by the UBDN. A review of UBDN data (1999-2021) showed that major birth defects in Utah were associated with 1.51 infant deaths per 1,000 live births. The prevalence rates of birth defects fluctuate over time. Common birth defects in Utah include heart defects (i.e. atrial septal defect, ventricular septal defect, pulmonary valve atresia/stenosis), hypospadias, Trisomy 21 (Down syndrome), and craniosynostosis. Additional information is available at: Environmental Public Health Tracking Specific Utah Birth Defect Data[[br]] [https://ibis.utah.gov/epht-view/topic/BirthDefects.html] Birth Defect Infant Mortality[[br]] [https://ibis.utah.gov/ibisph-view/indicator/view/BrthDefInfMort.html] Infant Mortality[[br]] [https://ibis.utah.gov/ibisph-view/indicator/view/InfMort.html]

How Do We Compare With the U.S.?

Overall comparisons of birth defect rates with the U.S. must be interpreted with caution because each state may collect the data differently. The overall rate of birth defects in Utah is generally in line with what is expected based on national and international levels. Data from other states is available at the National Birth Defects Prevention Network (NBDPN) website ([https://www.nbdpn.org/ar.php]).

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 UBDN is to prevent birth defects and secondary disabilities by monitoring occurrences, 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 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 of 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 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 levels 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. (For more information, see [http://www.nbdpn.org]).

Available Services

Baby Watch Early Intervention Services[[br]] Phone (801) 273-2998[[br]] Toll Free (800) 961-4226[[br]] [https://mothertobaby.utah.gov/][[br]] Early Intervention services are available for children birth to three years of age with developmental delay or disability. Services include child health assessment, service coordination among providers, occupational and physical therapy, and speech and language therapy. 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/] Integrated Services[[br]] (801) 273-2988[[br]] [https://familyhealth.utah.gov/cshcn/integrated-services-program/][[br]] Integrated Services assists families of children and youth who have special health care needs with coordinated care planning, education and resources in order for them to make informed decisions.

Data Notes

Preliminary data was used in this indicator which may lead to some birth defects counts to be an overestimation. The denominator for hypospadias and congenital posterior urethral valves is number of male live births. The denominator for Turner syndrome is number of female live births. TAPVC = total anomalous pulmonary venous connection.   [[br]][[br]] ^ ^**Prevalence rates for bladder exstrophy, cloacal exstrophy, and single ventricle were suppressed under DHHS suppression guidelines.

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][[br]] Utah Family Voices - Family to Family Health Information Center[[br]] Phone (801) 272-1068[[br]] Toll Free (800) 468-1160 [https://utahparentcenter.org/projects/ufv/]