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Arizona Birth Defects Monitoring Program (ABDMP)

Arizona Birth Defects Monitoring Program (ABDMP). ABDMP. 3 Components: Surveillance Prevention Referral to Services. Surveillance. Surveillance. Goals: Timely, Accurate, Complete Data Bureau of Public Health Statistics CDC and National Birth Defects Prevention Network

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Arizona Birth Defects Monitoring Program (ABDMP)

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  1. Arizona Birth Defects Monitoring Program (ABDMP)

  2. ABDMP • 3 Components: • Surveillance • Prevention • Referral to Services

  3. Surveillance

  4. Surveillance Goals: 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

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

  6. 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

  7. Arizona Totals

  8. 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

  9. 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 • CongentialDiapragmatic 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

  10. *Important Notes*

  11. 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

  12. Prevention

  13. Prevention • Primary – Prevent Birth Defects • Secondary – Prevent Morbidity & Quality of Life Issues • Tertiary – Preventing Birth Defect Related Deaths

  14. Secondary and Tertiary Prevention • Newborn Screening • Hearing Screening • Pulse Oximetry Screening • Secondary Issues/ Associations • standard screenings • genetics

  15. Primary Prevention:The causes of 65-75% of birth defects are unknown. Known causes include: • Genetics 15-25% • Environmental 10% • Maternal Conditions • Infections • Exposures

  16. Areas for InterventionPreconception/Prenatal/InterconceptionHealth

  17. 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

  18. Referral to Services

  19. 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

  20. 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

  21. Dianna ContrerasArizona Birth Defects Monitoring Program Managerdianna.contreras@azdhs.gov602 542 7335abdmp@azdhs.gov

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