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Health and Wellness for all Arizonans

Arizona Birth Defects Monitoring Program

(ABDMP)


ABDMP

• 3 Components:– Surveillance– Prevention– Referral to Services


Surveillance


SurveillanceGoals: Timely, Accurate, Complete Data

• Bureau of Public Health Statistics

• CDC and National Birth Defects Prevention Network– standards and recommendations

• Data calls for CDC, NBDPN, Birth Defects Research publication; multi state research projects; cluster studies


ABDMP Surveillance

• 33 categories of defects• Population based registry• Active surveillance• Sources:– Hospital Discharge data– Hospital Discharge Indices– Birth and Fetal Death Certificates


Significance in Arizona• Arizona: 1,500 children are born with serious birth defects

every year– the reportable birth defect rate for Arizona is 7.9 cases per 1,000

live and still births.

• In 2009, children (0-17) with birth defects accounted for about 13.3% of all pediatric hospitalizations.

• Birth defects are a leading cause of death for infants (>28 days; < 365 days)– 20% of all infant deaths– Each year, more infant deaths are attributed to birth defects than

prematurity and SIDS/SUIDS combined


Arizona Totals

2006 2007 2008 2009 2010 20110

100

200

300

400

500

600

700

800

900

1000

758 782

908

771

680

456

653 677

769696

609

412

Total birth defect cases and defects, Arizona, 2006-2011

total re-portable de-fects

total re-portable cases


Arizona• The most common type of anomalies are congenital

heart defects (CHDs).

• The most common specific anomalies observed for 2010 are Down syndrome, oral clefts, pulmonary valve atresia/stenosis, and gastroschisis.

• AZ has higher than average rates of oral cleft defects, and slightly higher rates of spina bifida


Home Births and Birth Defects• 2000-2011: 1-5 homebirths of children with birth defects per year

• Anomalies noted vary greatly; include:– Down Syndrome– Cleft lip with and without cleft palate/Cleft palate– Various CHDs

• Tetralogy of Fallot• Coarctation of Aorta• Transposition of the Great Arteries

– Gastroschisis– Congential Diapragmatic Hernia– “Lethal” anomalies

• Anencephaly; Trisomy 13, 18• Families with “lethal” diagnoses may choose to delivery at home or birthing centers to

limit medical intervention/interference and to improve quality of time with child


*Important Notes*


Anen-cephalus

CL with and without CP

Gastroschisis Lower limb reduction

Upper limb reduction

Spina Bifida Down Syndrome

30

31

32

33

34

35

36

37

38

39

40

Mean Gestational Ages at Birth live births only, select ABDMP

defects, 2008-2011

2008

2009

2010

2011*

Wee

ks g

esta

tion

AZ all births mean


Associations• Down Syndrome– Higher rates of heart defects, hearing loss,

• Oral Clefts– Midline defect– Syndromes– Feeding issues

• CHDs– 25% are not diagnosed prenatally– May not present for several days or even months – Pulse oximetry screening


Prevention


Prevention

• Primary – Prevent Birth Defects• Secondary – Prevent Morbidity & Quality of Life

Issues• Tertiary – Preventing Birth Defect Related Deaths


Secondary and Tertiary Prevention

• Newborn Screening• Hearing Screening• Pulse Oximetry Screening• Secondary Issues/ Associations– standard screenings– genetics


Primary Prevention:The causes of 65-75% of birth defects

are unknown.

Known causes include:• Genetics 15-25%• Environmental 10%– Maternal Conditions– Infections– Exposures


Areas for Intervention

Preconception/Prenatal/Interconception

Health


• Folic acid– CDC recommends 400 mg daily for women of childbearing age– Taking folic acid before pregnancy can reduce the risk of NTDs by up to 70%– Inadequate folic acid also linked to increased risk of oral clefts, Down syndrome,

autism…

• Interpregnancy Intervals– 18-24 months between end of pregnancy and conception of next

• Regardless of outcome: miscarriage, preterm, stillbirth; live birth– 40% increase in low birth weight babies– Potential increased risk of miscarriage, preterm birth, low birth weight, birth

defects, maternal death

• Alcohol and other drug exposure– Alcohol exposure during pregnancy is the leading preventable cause of birth

defects, cognitive disabilities, and neurobehavioral disorders. – Alcohol affects whatever organ or system that is currently growing, including:

• Brain, heart, bones, kidneys, eyes, ears, face


Referral to Services


Referral

• Medical Treatment– Babies with birth defects born at home were seen

at hospitals same day-months after delivery• Support Programs – Social workers– Community groups with hospital visitation


Resources• http://www.azdhs.gov/phs/phstats/bdr/resources.htm– ADHS website: A to Z Index: B: Birth Defects

Monitoring Program• Sharing Down Syndrome• Down Syndrome Network• Spina Bifida Association of Arizona• Feeding Matters• Mended Little Hearts

http://www.azdhs.gov/phs/phstats/bdr/resources.htm

http://www.azdhs.gov/phs/phstats/bdr/resources.htm


Dianna ContrerasArizona Birth Defects Monitoring Program Manager

[email protected] 542 7335

[email protected]

mailto:[email protected]

mailto:[email protected]

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