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Complete PHOM Indicator Profile 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).

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]] [http://www.health.utah.gov/birthdefect] Environmental Public Health Tracking Specific Utah Birth Defect Data[[br]] [http://epht.health.utah.gov/epht-view/topic/BirthDefects.html]

How Are We Doing?

From 1994 through 2016, the Utah Birth Defect Network (UBDN) has identified over 20,000 pregnancies affected by at least one major birth defect collected by the UBDN. A review of UBDN data (1999-2016) showed that major birth defects in Utah were associated with 1.55 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), hypospadis, Trisomy 21 (Down syndrome), and craniosynostosis. Additional information 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 occurrence, referring to services, facilitating research, and providing education and outreach to children and families in Utah. The UBDN is a program under the Bureau of Children with Special Healthcare Needs, Division of Family Health and Preparedness, Utah Department of Health. 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 risk of birth defects and its associated negative health outcomes. For birth defect prevention, the UBDN works with Utah communities to provide information and resources on how to reduce risk for birth defects through engaging in healthy lifestyles, avoiding environmental hazards, and talking with healthcare providers. For 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 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. (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]] [http://www.utahbabywatch.org][[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://health.utah.gov/cshcn/programs/integratesrvs.html][[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.

More Information

Utah Birth Defect Network [[br]] Toll Free (866) 818-7096[[br]] [http://www.health.utah.gov/birthdefect] 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/]


Graphical Data Views

Birth Defects Prevalence by Birth Defect, Utah, 2014-2016

::chart - missing::
confidence limits

Birth DefectRate per 10,000 Live BirthsLower LimitUpper LimitNumer- atorDenom- inator
Record Count: 46
Anencephalus1.61.12.425152,426
Anophthalmia/microphthalmia1.71.12.526152,426
Anotia/microtia2.61.83.439152,426
Aortic valve stenosis3.82.84.858152,426
Atrial septal defect25.522.928.0388152,426
Atriventricular septal defect6.25.07.595152,426
Biliary atresia1.00.61.615152,426
Bladder exstrophy**0.10.8152,426
Choanal atresia1.40.92.222152,426
Cleft lip alone (without cleft palate)4.83.75.973152,426
Cleft lip with cleft palate7.86.49.2119152,426
Cleft palate alone (without cleft lip)8.06.69.4122152,426
Cloacal exstrophy0.00.00.20152,426
Coarctation of aorta9.37.810.8142152,426
Common truncus0.90.51.513152,426
Congenital cataract3.22.34.149152,426
Congenital posterior urethral valves1.91.13.21578,142
Craniosynostosis11.810.113.5180152,426
Deletion 22 q 11.21.51.02.323152,426
Diaphragmatic hernia4.03.05.061152,426
Double outlet right ventricle (DORV)2.41.63.136152,426
Ebstein anomaly1.30.82.020152,426
Encephalocele1.20.81.919152,426
Esophageal atresia/tracheoesophageal2.81.93.642152,426
Gastroschisis4.73.65.771152,426
Holoprosencephaly2.01.32.731152,426
Hypoplastic left heart syndrome4.13.15.162152,426
Hypospadis73.867.879.957778,142
Interrupted aortic arch**0.31.2152,426
Limb deficiences5.84.67.088152,426
Omphalocele3.02.13.946152,426
Pulmonary valve atresia and stenosis11.810.113.5180152,426
Rectal and large intestinal atresia/stenosis4.53.45.568152,426
Renal agenesis/hypoplasia4.83.75.973152,426
Single ventricle**0.00.6152,426
Small intestinal atresia/stenosis3.52.54.453152,426
Spina bifida without anencephaly4.33.25.365152,426
Tetralogy of Fallot3.72.74.656152,426
TAPVC1.51.02.323152,426
Transposition of the great arteries4.33.35.466152,426
Tricuspid valve atresia and stenosis1.20.71.918152,426
Trisomy 131.61.12.425152,426
Trisomy 183.92.94.959152,426
Trisomy 21 (Down syndrome)18.216.020.3277152,426
Turner syndrome5.13.56.73874,282
Ventricular septal defect24.622.127.1375152,426

Data Notes

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 extrophy, interrupted aortic arch, and single ventricle were suppressed under UDOH suppression guidelines.

Data Source

Utah Birth Defect Network


Birth Defects Prevalence by Birth Defect, Utah, 2011-2013

::chart - missing::
confidence limits

Birth DefectRate per 10,000 Live BirthsLower LimitUpper LimitNumer- atorDenom- inator
Record Count: 46
Anencephalus2.31.63.136153,497
Anophthalmia/microphthalmia1.61.12.425153,497
Anotia/microtia4.63.55.771153,497
Aortic valve stenosis3.72.74.757153,497
Atrial septal defect48.044.551.5737153,497
Atriventricular septal defect6.45.17.698153,497
Biliary atresia**0.31.2153,497
Bladder exstrophy**0.00.4153,497
Choanal atresia1.61.12.425153,497
Cleft lip alone (without cleft palate)5.74.56.987153,497
Cleft lip with cleft palate7.46.08.7113153,497
Cleft palate alone (without cleft lip)6.55.27.8100153,497
Cloacal exstrophy**0.10.9153,497
Coarctation of aorta10.18.511.7155153,497
Common truncus0.90.51.514153,497
Congenital cataract2.71.93.541153,497
Congenital posterior urethral valves3.52.45.12878,979
Craniosynostosis11.59.813.2177153,497
Deletion 22 q 11.21.50.92.223153,497
Diaphragmatic hernia4.03.05.061153,497
Double outlet right ventricle (DORV)1.91.32.729153,497
Ebstein anomaly1.40.82.121153,497
Encephalocele0.90.51.514153,497
Esophageal atresia/tracheoesophageal3.02.13.946153,497
Gastroschisis3.62.74.656153,497
Holoprosencephaly1.30.82.020153,497
Hypoplastic left heart syndrome2.82.03.643153,497
Hypospadis68.562.774.354178,979
Interrupted aortic arch0.70.41.311153,497
Limb deficiences6.85.58.1105153,497
Omphalocele2.92.13.845153,497
Pulmonary valve atresia and stenosis15.213.217.1233153,497
Rectal and large intestinal atresia/stenosis4.13.15.163153,497
Renal agenesis/hypoplasia4.43.45.568153,497
Single ventricle**0.31.2153,497
Small intestinal atresia/stenosis3.42.54.352153,497
Spina bifida without anencephaly3.82.84.858153,497
Tetralogy of Fallot3.12.23.947153,497
TAPVC1.50.92.223153,497
Transposition of the great arteries5.54.46.785153,497
Tricuspid valve atresia and stenosis1.00.61.716153,497
Trisomy 131.61.12.425153,497
Trisomy 183.72.74.757153,497
Trisomy 21 (Down syndrome)16.114.118.1247153,497
Turner syndrome4.63.06.13474,517
Ventricular septal defect28.525.931.2438153,497

Data Notes

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 biliary atresia, bladder extrophy, cloacal extrophy, and single ventricle were suppressed under UDOH suppression guidelines.

Data Source

Utah Birth Defect Network


Birth Defects Prevalence by Birth Defect, Utah, 2008-2010

::chart - missing::
confidence limits

Birth DefectRate per 10,000 Live BirthsLower LimitUpper LimitNumer- atorDenom- inator
Record Count: 46
Anencephalus2.82.03.746161,618
Anophthalmia/microphthalmia2.21.53.036161,618
Anotia/microtia3.72.84.760161,618
Aortic valve stenosis4.33.35.369161,618
Atrial septal defect44.140.947.4713161,618
Atriventricular septal defect5.84.67.094161,618
Biliary atresia**0.31.1161,618
Bladder exstrophy**0.10.8161,618
Choanal atresia1.71.22.528161,618
Cleft lip alone (without cleft palate)5.14.06.283161,618
Cleft lip with cleft palate9.07.510.4145161,618
Cleft palate alone (without cleft lip)5.54.46.789161,618
Cloacal exstrophy**0.10.8161,618
Coarctation of aorta10.18.611.7164161,618
Common truncus0.70.31.211161,618
Congenital cataract2.92.13.747161,618
Congenital posterior urethral valves3.32.14.72782,886
Craniosynostosis11.610.013.3188161,618
Deletion 22 q 11.20.90.51.514161,618
Diaphragmatic hernia3.62.74.558161,618
Double outlet right ventricle (DORV)2.01.32.732161,618
Ebstein anomaly1.10.61.717161,618
Encephalocele1.00.61.616161,618
Esophageal atresia/tracheoesophageal2.71.93.543161,618
Gastroschisis5.14.06.283161,618
Holoprosencephaly2.01.32.732161,618
Hypoplastic left heart syndrome3.52.64.456161,618
Hypospadis67.061.472.555582,886
Interrupted aortic arch**0.31.1161,618
Limb deficiences6.14.97.399161,618
Omphalocele3.72.74.659161,618
Pulmonary valve atresia and stenosis16.114.118.0260161,618
Rectal and large intestinal atresia/stenosis3.52.64.457161,618
Renal agenesis/hypoplasia3.72.74.659161,618
Single ventricle**0.10.8161,618
Small intestinal atresia/stenosis2.41.63.138161,618
Spina bifida without anencephaly3.32.44.253161,618
Tetralogy of Fallot3.22.34.152161,618
TAPVC1.10.71.818161,618
Transposition of the great arteries4.33.35.369161,618
Tricuspid valve atresia and stenosis1.30.82.021161,618
Trisomy 131.71.22.528161,618
Trisomy 183.52.64.457161,618
Trisomy 21 (Down syndrome)15.213.317.1245161,618
Turner syndrome4.22.85.63378,731
Ventricular septal defect25.322.927.8409161,618

Data Notes

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 biliary atresia, bladder extrophy, cloacal extrophy, interrupted aortic arch, and single ventricle were suppressed under UDOH suppression guidelines.

Data Source

Utah Birth Defect Network


Birth Defects Prevalence by Birth Defect, Utah, 2005-2007

::chart - missing::
confidence limits

Birth DefectRate per 10,000 Live BirthsLower LimitUpper LimitNumer- atorDenom- inator
Record Count: 46
Anencephalus2.71.93.543160,055
Anophthalmia/microphthalmia1.61.12.426160,055
Anotia/microtia3.42.54.354160,055
Aortic valve stenosis5.24.16.484160,055
Atrial septal defect38.235.241.3612160,055
Atriventricular septal defect5.74.56.991160,055
Biliary atresia0.70.41.312160,055
Bladder exstrophy**0.00.5160,055
Choanal atresia1.40.92.122160,055
Cleft lip alone (without cleft palate)4.93.86.079160,055
Cleft lip with cleft palate7.76.39.0123160,055
Cleft palate alone (without cleft lip)7.66.28.9121160,055
Cloacal exstrophy**0.10.6160,055
Coarctation of aorta9.17.610.6146160,055
Common truncus**0.21.0160,055
Congenital cataract2.71.93.644160,055
Congenital posterior urethral valves2.51.63.92182,489
Craniosynostosis11.710.113.4188160,055
Deletion 22 q 11.21.40.92.122160,055
Diaphragmatic hernia3.22.34.151160,055
Double outlet right ventricle (DORV)1.61.12.426160,055
Ebstein anomaly0.90.51.514160,055
Encephalocele0.90.51.514160,055
Esophageal atresia/tracheoesophageal3.12.34.050160,055
Gastroschisis5.14.06.282160,055
Holoprosencephaly1.91.32.631160,055
Hypoplastic left heart syndrome3.52.64.456160,055
Hypospadis65.059.570.553682,489
Interrupted aortic arch0.90.51.514160,055
Limb deficiences7.36.08.6117160,055
Omphalocele2.11.42.834160,055
Pulmonary valve atresia and stenosis13.411.615.2214160,055
Rectal and large intestinal atresia/stenosis4.23.25.267160,055
Renal agenesis/hypoplasia4.33.35.369160,055
Single ventricle**0.31.1160,055
Small intestinal atresia/stenosis3.62.64.557160,055
Spina bifida without anencephaly4.63.65.774160,055
Tetralogy of Fallot3.72.84.760160,055
TAPVC1.30.82.021160,055
Transposition of the great arteries4.63.55.673160,055
Tricuspid valve atresia and stenosis1.10.71.818160,055
Trisomy 132.31.63.137160,055
Trisomy 183.72.74.659160,055
Trisomy 21 (Down syndrome)14.412.616.3231160,055
Turner syndrome5.53.97.24377,566
Ventricular septal defect24.622.227.0394160,055

Data Notes

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 extrophy, cloacal extrophy, common truncus, and single ventricle were suppressed under UDOH suppression guidelines.

Data Source

Utah Birth Defect Network


Birth Defects Prevalence by Birth Defect, Utah, 2002-2004

::chart - missing::
confidence limits

Birth DefectRate per 10,000 Live BirthsLower LimitUpper LimitNumer- atorDenom- inator
Record Count: 46
Anencephalus1.91.32.829149,627
Anophthalmia/microphthalmia1.91.22.728149,627
Anotia/microtia3.32.44.350149,627
Aortic valve stenosis3.72.74.655149,627
Atrial septal defect25.923.328.4387149,627
Atriventricular septal defect5.64.46.884149,627
Biliary atresia0.90.51.513149,627
Bladder exstrophy**0.00.5149,627
Choanal atresia1.00.61.715149,627
Cleft lip alone (without cleft palate)6.04.87.390149,627
Cleft lip with cleft palate7.86.39.2116149,627
Cleft palate alone (without cleft lip)7.76.39.1115149,627
Cloacal exstrophy**0.21.1149,627
Coarctation of aorta8.47.09.9126149,627
Common truncus0.80.41.412149,627
Congenital cataract2.51.73.338149,627
Congenital posterior urethral valves2.41.43.71876,461
Craniosynostosis9.37.710.8139149,627
Deletion 22 q 11.22.51.73.337149,627
Diaphragmatic hernia3.62.64.654149,627
Double outlet right ventricle (DORV)2.01.42.930149,627
Ebstein anomaly0.90.51.513149,627
Encephalocele0.90.51.513149,627
Esophageal atresia/tracheoesophageal2.31.63.135149,627
Gastroschisis5.34.16.479149,627
Holoprosencephaly1.30.82.120149,627
Hypoplastic left heart syndrome3.52.64.553149,627
Hypospadis61.555.967.047076,461
Interrupted aortic arch**0.10.8149,627
Limb deficiences7.15.78.4106149,627
Omphalocele2.92.03.743149,627
Pulmonary valve atresia and stenosis13.411.615.3201149,627
Rectal and large intestinal atresia/stenosis3.82.84.857149,627
Renal agenesis/hypoplasia3.62.64.654149,627
Single ventricle0.90.51.614149,627
Small intestinal atresia/stenosis2.71.83.540149,627
Spina bifida without anencephaly4.53.45.667149,627
Tetralogy of Fallot3.72.74.655149,627
TAPVC1.10.61.716149,627
Transposition of the great arteries5.03.96.175149,627
Tricuspid valve atresia and stenosis1.51.02.323149,627
Trisomy 131.61.02.424149,627
Trisomy 183.42.54.351149,627
Trisomy 21 (Down syndrome)16.214.218.3243149,627
Turner syndrome6.24.47.94573,166
Ventricular septal defect20.818.523.1311149,627

Data Notes

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 extrophy, cloacal extrophy, and interrupted aortic arch were suppressed under UDOH suppression guidelines.

Data Source

Utah Birth Defect Network


Birth Defects Prevalence by Birth Defect, Utah, 1999-2001

::chart - missing::
confidence limits

Birth DefectRate per 10,000 Live BirthsLower LimitUpper LimitNumer- atorDenom- inator
Record Count: 46
Anencephalus2.21.43.031141,489
Anophthalmia/microphthalmia1.71.12.524141,489
Anotia/microtia2.01.42.929141,489
Aortic valve stenosis2.71.83.538141,489
Atrial septal defect18.416.120.6260141,489
Atriventricular septal defect6.04.77.385141,489
Biliary atresia**0.21.1141,489
Bladder exstrophy**0.10.7141,489
Choanal atresia1.81.22.726141,489
Cleft lip alone (without cleft palate)5.64.46.879141,489
Cleft lip with cleft palate9.17.510.7129141,489
Cleft palate alone (without cleft lip)7.86.39.2110141,489
Cloacal exstrophy**0.00.6141,489
Coarctation of aorta7.66.29.1108141,489
Common truncus0.80.41.512141,489
Congenital cataract2.21.43.031141,489
Congenital posterior urethral valves2.21.33.61672,899
Craniosynostosis8.67.010.1121141,489
Deletion 22 q 11.21.81.22.726141,489
Diaphragmatic hernia3.42.44.448141,489
Double outlet right ventricle (DORV)1.61.02.422141,489
Ebstein anomaly**0.31.2141,489
Encephalocele0.90.51.613141,489
Esophageal atresia/tracheoesophageal2.81.93.639141,489
Gastroschisis4.23.25.360141,489
Holoprosencephaly1.00.51.714141,489
Hypoplastic left heart syndrome3.72.74.853141,489
Hypospadis52.447.157.738272,899
Interrupted aortic arch0.80.41.411141,489
Limb deficiences7.45.98.8104141,489
Omphalocele2.61.83.537141,489
Pulmonary valve atresia and stenosis11.39.613.1160141,489
Rectal and large intestinal atresia/stenosis3.32.34.246141,489
Renal agenesis/hypoplasia3.62.64.651141,489
Single ventricle1.10.61.715141,489
Small intestinal atresia/stenosis3.02.13.942141,489
Spina bifida without anencephaly3.32.44.347141,489
Tetralogy of Fallot5.03.96.271141,489
TAPVC0.90.51.613141,489
Transposition of the great arteries5.44.26.777141,489
Tricuspid valve atresia and stenosis1.30.82.119141,489
Trisomy 131.50.92.321141,489
Trisomy 183.42.44.448141,489
Trisomy 21 (Down syndrome)15.213.217.2215141,489
Turner syndrome5.73.97.53968,585
Ventricular septal defect16.914.819.0239141,489

Data Notes

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 biliary atresia, bladder extrophy, cloacal extrophy, and ebstein anomaly were suppressed under UDOH suppression guidelines.

Data Source

Utah Birth Defect Network


Page Content Updated On 10/29/2019, Published on 11/04/2019
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Content updated: Mon, 4 Nov 2019 13:05:40 MST