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Pregnancy Outcome Patterns for Selected Birth Defects in Texas. Mary Ethen, MPH Amy Case, MAHS Texas Birth Defects Monitoring Division. Features of the Texas Birth Defects Registry. Active surveillance--trained staff visit facilities to collect information
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Pregnancy Outcome Patterns for Selected Birth Defects in Texas Mary Ethen, MPH Amy Case, MAHS Texas Birth Defects Monitoring Division
Features of the Texas Birth Defects Registry • Active surveillance--trained staff visit facilities to collect information • Coverage of more than 365,000 live births annually (statewide) • Computerized database of infants and pregnancies affected by birth defects • Emphasis on structural malformations • Cases matched to vital record
Texas Birth Defects Registry Case Definition • Mother resides in Texas at delivery • Includes live births, fetal deaths, and elective terminations of any gestational age • Infant/fetus must have one or more structural or chromosomal birth defects, or Fetal Alcohol Syndrome • Defect must be diagnosed within the first year after delivery (within six years for Fetal Alcohol Syndrome)
Methods • Deliveries in the Texas Birth Defects Registry that occurred 1999-2000 • Forty-nine major defect categories • Gestational age calculated from last menstrual period (LMP) or neonatal examination
Methods • Pregnancy outcome based on information abstracted from medical records • Registry records matched to vital records • 97% agreement between pregnancy outcome (Registry) and type of vital record matched
Complete expulsion or extraction a product of conception Any gestational age After delivery, shows any vital signs (heartbeat, voluntary breathing, umbilical cord pulsation, voluntary muscle movement) Most common outcome by far of Registry cases 100% of Cases in Registry were Live Birth for these Defects: Cataract Aniridia Hirschsprung Disease Biliary Atresia Bladder Exstrophy Congenital Hip Dislocation FAS Live Birth
Spontaneous death of a product of conception prior to the complete expulsion or extraction from its mother. Onset of labor may be natural or induced. Also referred to as spontaneous abortion, miscarriage or stillbirth. Outcome in 1.83% of Texas infants and fetuses with a birth defect. Examples (any gestational age): Anencephaly (21.7%) Holoprosencephaly (10.5%) Anophthalmia (14.3%) Lower Limb Reduction (10.5%) Omphalocele (12.0%) Trisomy 13 (10.5%) Trisomy 18 (11.6%) Fetal Death
After pregnancy is medically verified Intended to terminate intrauterine pregnancy (other than for the purpose of either the birth of a live infant or the removal of a dead fetus) Also referred to as induced abortion therapeutic abortion elective abortion elective termination Outcome in 2.32% of Texas infants and fetuses with a birth defect Examples (any gestational age): Anencephaly (48.9%) Encephalocele (28.6%) Holoprosencephaly (17.11%) Anophthalmia (33.3%) Omphalocele (16.4%) Trisomy 13 (24.2%) Trisomy 18 (40.7%) Induced Termination
Live Birth, Any Gestational Age Fetal Death <20 Weeks Gestation Fetal Death 20+ Weeks Gestation Induced Termination, <20 Weeks Gestation Induced Termination, 20+ Weeks Gestation Unspecified fetal death or medical termination Pregnancy Outcome & Gestational Age Categories
Mother’s health (infections, treatment for chronic conditions) Prenatal diagnosis Prognosis for Child Lethality of defect Degree of impairment Expectation of health Co-occurring defects Others? __________________________ __________________________ __________________________ Factors that May Influence Pregnancy Outcome
Infants and Fetuses with Any Monitored Defect GA = Gestational Age
Pregnancy Outcomes for Selected Neural Tube DefectsTexas, 1999-2000
Pregnancy Outcomes for Selected Chromosomal Defects (Trisomies), Texas, 1999-2000
Pregnancy Outcomes for Selected Abdominal Wall DefectsTexas, 1999-2000
Pregnancy Outcome Other than Live Birth, by Maternal Race/Ethnicity
Percent of Cases Resulting in Induced Termination by Maternal Race/Ethnicity
Percent of Cases Resulting in Fetal Death by Maternal Race/Ethnicity
Possible misclassification of pregnancy outcomes Difficult to determine intended outcome from medical record Lethal/non-lethal conditions in the same defect group (e.g. renal agenesis/ dysgenesis) Birth defects among early fetal deaths (miscarriage) and early terminations likely to be under-ascertained Less severe defects co-occur with more severe defects Analysis not restricted to isolated defects Limitations
Acknowledgements • TBDMD Surveillance Staff • Texas Department of Health Bureau of Vital Statistics • Mark Canfield, Ph.D., Director, Texas Birth Defects Monitoring Division