Arizona Birth Defects Monitoring Program ABDMP Health and
Arizona Birth Defects Monitoring Program (ABDMP) Health and Wellness for all Arizonans
ABDMP • 3 Components: – Surveillance – Prevention – Referral to Services Health and Wellness for all Arizonans
Surveillance 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 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 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 Health and Wellness for all Arizonans
Arizona Totals Total birth defect cases and defects, Arizona, 2006 -2011 1000 908 900 800 782 758 771 769 700 653 680 696 677 total reportable defects 609 456 500 412 300 total reportable cases 200 100 0 2006 2007 2008 2009 2010 2011 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 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 Health and Wellness for all Arizonans
*Important Notes* Health and Wellness for all Arizonans
Mean Gestational Ages at Birth live births only, select ABDMP defects, 2008 -2011 40 AZ all births mean Weeks gestation 38 36 2008 34 2009 32 2010 2011* 30 Anencephalus CL with and without CP Gastroschisis Lower limb reduction Upper limb reduction Spina Bifida Down Syndrome Health and Wellness for all Arizonans
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 Health and Wellness for all Arizonans
Prevention Health and Wellness for all Arizonans
Prevention • Primary – Prevent Birth Defects • Secondary – Prevent Morbidity & Quality of Life Issues • Tertiary – Preventing Birth Defect Related Deaths Health and Wellness for all Arizonans
Secondary and Tertiary Prevention • • Newborn Screening Hearing Screening Pulse Oximetry Screening Secondary Issues/ Associations – standard screenings – genetics 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 Health and Wellness for all Arizonans
Areas for Intervention Preconception/Prenatal/ Interconception 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 Health and Wellness for all Arizonans
Referral to Services 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 Health and Wellness for all Arizonans
Resources • http: //www. azdhs. gov/phstats/bdr/resources. htm – ADHS website: A to Z Index: B: Birth Defects Monitoring Program • • • Sharing Down Syndrome Network Spina Bifida Association of Arizona Feeding Matters Mended Little Hearts Health and Wellness for all Arizonans
Dianna Contreras Arizona Birth Defects Monitoring Program Manager dianna. contreras@azdhs. gov 602 542 7335 abdmp@azdhs. gov Health and Wellness for all Arizonans
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