1. Health and Wellness for all Arizonans Arizona Birth Defects Monitoring Program (ABDMP)

2. Health and Wellness for all Arizonans ABDMP 3 Components: – Surveillance – Prevention – Referral to Services

3. Health and Wellness for all Arizonans Surveillance

4. Health and Wellness for all Arizonans 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. Health and Wellness for all Arizonans ABDMP Surveillance 33 categories of defects Population based registry Active surveillance Sources: – Hospital Discharge data – Hospital Discharge Indices – Birth and Fetal Death Certificates

6. Health and Wellness for all Arizonans 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. Health and Wellness for all Arizonans Arizona Totals

8. Health and Wellness for all Arizonans 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. Health and Wellness for all Arizonans 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

10. Health and Wellness for all Arizonans *Important Notes*

11. Health and Wellness for all Arizonans

12. 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

13. Health and Wellness for all Arizonans Prevention

14. Health and Wellness for all Arizonans Prevention Primary – Prevent Birth Defects Secondary – Prevent Morbidity & Quality of Life Issues Tertiary – Preventing Birth Defect Related Deaths

15. Health and Wellness for all Arizonans Secondary and Tertiary Prevention Newborn Screening Hearing Screening Pulse Oximetry Screening Secondary Issues/ Associations – standard screenings – genetics

16. Health and Wellness for all Arizonans Primary Prevention: The causes of 65-75% of birth defects are unknown. Known causes include: Genetics 15-25% Environmental 10% – Maternal Conditions – Infections – Exposures

17. Health and Wellness for all Arizonans Areas for Intervention Preconception/Prenatal/ Interconception Health

18. Health and Wellness for all Arizonans 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

19. Health and Wellness for all Arizonans Referral to Services

20. Health and Wellness for all Arizonans 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

21. Health and Wellness for all Arizonans 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

22. Health and Wellness for all Arizonans Dianna Contreras Arizona Birth Defects Monitoring Program Manager dianna.contreras@azdhs.gov 602 542 7335 abdmp@azdhs.gov dianna.contreras@azdhs.gov abdmp@azdhs.gov