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Complete Health Indicator Report of Birth Defects: Overall

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]] [http://epht.health.utah.gov/epht-view/topic/BirthDefects.html]

How Are We Doing?

With birth data from 1994 through 2020, 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 (1999-2020) 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]] [http://epht.health.utah.gov/epht-view/topic/BirthDefects.html] Birth Defect Infant Mortality[[br]] [http://ibis.health.utah.gov/indicator/view/BrthDefInfMort.html] Infant Mortality[[br]] [http://ibis.health.utah.gov/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.


Related Indicators

Related Relevant Population Characteristics Indicators:




Graphical Data Views

Birth defects prevalence by birth defect, Utah, 2016-2020

::chart - missing::
confidence limits

Birth DefectRate per 10,000 live birthsLower LimitUpper LimitNumer- atorDenom- inator
Record Count: 46
Anencephalus2.11.52.649238,831
Anophthalmia/microphthalmia2.01.42.547238,831
Anotia/microtia3.22.53.976238,831
Aortic valve stenosis3.93.14.793238,831
Atrial septal defect32.230.034.5770238,831
Atriventricular septal defect5.04.15.9120238,831
Biliary atresia0.70.41.116238,831
Bladder exstrophy**0.00.4238,831
Choanal atresia1.30.81.831238,831
Cleft lip alone (without cleft palate)4.94.05.8117238,831
Cleft lip with cleft palate6.95.98.0165238,831
Cleft palate alone (without cleft lip)7.16.08.2170238,831
Cloacal exstrophy**0.00.2238,831
Coarctation of aorta10.49.111.7249238,831
Common truncus0.70.41.117238,831
Congenital cataract3.93.14.794238,831
Congenital posterior urethral valves1.50.92.318122,740
Craniosynostosis11.610.313.0278238,831
Deletion 22 q 11.21.51.12.037238,831
Diaphragmatic hernia4.83.95.6114238,831
Double outlet right ventricle (DORV)2.92.23.669238,831
Ebstein anomaly1.10.71.626238,831
Encephalocele1.00.61.423238,831
Esophageal atresia/tracheoesophageal3.83.04.691238,831
Gastroschisis4.13.34.997238,831
Holoprosencephaly1.91.32.445238,831
Hypoplastic left heart syndrome4.43.55.2104238,831
Hypospadias63.659.268.1781122,740
Interrupted aortic arch0.50.30.912238,831
Limb deficiences6.05.07.0144238,831
Omphalocele2.82.23.568238,831
Pulmonary valve atresia and stenosis15.714.117.3375238,831
Rectal and large intestinal atresia/stenosis4.23.45.0100238,831
Renal agenesis/hypoplasia5.54.66.5132238,831
Single ventricle**0.10.6238,831
Small intestinal atresia/stenosis3.93.14.793238,831
Spina bifida without anencephaly4.33.45.1102238,831
Tetralogy of Fallot3.12.43.975238,831
TAPVC1.40.91.933238,831
Transposition of the great arteries3.22.53.977238,831
Tricuspid valve atresia and stenosis1.30.81.831238,831
Trisomy 131.81.32.444238,831
Trisomy 183.62.84.486238,831
Trisomy 21 (Down syndrome)18.216.519.9435238,831
Turner syndrome5.64.27.065116,087
Ventricular septal defect28.126.030.2671238,831

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]] [http://www.utahfamilyvoices.org/] Utah Family Voices - Family to Family Health Information Center[[br]] Phone (801) 272-1068[[br]] Toll Free (800) 468-1160 Medical Home Portal[[br]] Department of Pediatrics[[br]] University of Utah[[br]] [http://www.medicalhomeportal.org] Center for Disease Control and Prevention[[br]] State-Based Tracking Systems[[br]] [http://www.cdc.gov/ncbddd/birthdefects/states/]

More Resources and Links

Evidence-based community health improvement ideas and interventions may be found at the following sites:
  • Centers for Disease Control and Prevention (CDC) WONDER Database, a system for disseminating public health data and information.
  • United States Census Bureau data dashboard.
  • Utah healthy Places Index, evidence-based and peer-reviewed tool, supports efforts to prioritize equitable community investments, develop critical programs and policies across the state, and much more.
  • County Health Rankings
  • Kaiser Family Foundation's StateHealthFacts.org
  • Medical literature can be queried at PubMed library.



Page Content Updated On 01/02/2024, Published on 02/27/2024
The information provided above is from the Utah Department of Health and Human Services IBIS-PH web site (http://ibis.health.state.gov). The information published on this website may be reproduced without permission. Please use the following citation: " Retrieved Fri, 12 April 2024 15:10:15 from Utah Department of Health and Human Services, Indicator-Based Information System for Public Health Web site: http://ibis.health.state.gov ".

Content updated: Tue, 27 Feb 2024 15:16:55 MST