Prenatal diagnosis of orofacial clefts: association with maternal satisfaction, team care, and treatment outcomes.

OBJECTIVE: Prenatal diagnosis of an orofacial cleft is thought to allow mothers greater opportunity to become prepared for the special needs of an infant with a cleft and plan for the care of their child. Using a population-based sample, we determined which children were more likely to be diagnosed prenatally, and whether early diagnosis was associated with maternal satisfaction and treatment outcomes. DESIGN: Interviews were completed with 235 (49% of eligible) mothers of children ages 2 to 7 with orofacial clefts initially enrolled in the National Birth Defects Prevention Study from the Arkansas, Iowa, and New York sites. Maternal satisfaction with information, support, and treatment outcomes was compared between women who received a prenatal diagnosis and those who did not. RESULTS: Of 235 infants with clefts, 46 (19.6%) were identified prenatally. One third of mothers were somewhat or not satisfied with information provided by medical staff. Satisfaction did not vary by timing of the diagnosis. Infants diagnosed prenatally were no more likely to have received care provided by a recognized multidisciplinary cleft team (76%) than were infants diagnosed at birth (78%). Speech problems and facial appearance as rated by the mother did not vary by timing of the diagnosis. CONCLUSIONS: Timing of the cleft diagnosis did not alter maternal satisfaction with information, whether care was provided by a designated cleft team, or maternal perception of facial appearance or speech. Further research should determine whether prenatal diagnoses alter maternal anxiety or influence postnatal morbidity.

Reduction in newborns with discharge coding of in utero alcohol effects in the United States, 1993 to 2002.

OBJECTIVE: To determine whether use of the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) code for fetal alcohol effects has declined during the past 10 years among hospitalized newborns in the United States. DESIGN: Trends in use of the ICD-9-CM code 760.71, "alcohol affecting the fetus," among newborns from 1993 through 2002 were compared with trends in self-reported drinking during pregnancy and maternal diagnoses of alcohol abuse during childbirth. SETTING: Sampled short-term, nonfederal general and specialty hospitals. PARTICIPANTS: Infants born from 1993 to 2002 in the United States who were included in the Healthcare Cost and Utilization Project databases. MAIN OUTCOME MEASURES: Documentation of ICD-9-CM code 760.71 among newborns, self-reported drinking during pregnancy, and diagnoses of maternal alcohol abuse during childbirth from 1993 through 2002. RESULTS: The prevalence of the ICD-9-CM code 760.71 for alcohol affecting the fetus, as documented in the discharge record of newborns, declined from 0.73 (95% confidence interval, 0.56-0.92) per 1000 live births in 1993 to 0.17 (95% confidence interval, 0.13-0.20) per 1000 live births in 2002. Rates declined concurrently with those of self-reported alcohol consumption during pregnancy and diagnoses of maternal alcohol abuse during childbirth. CONCLUSIONS: Use of the ICD-9-CM code for alcohol affecting the fetus among newborns declined 75% throughout 10 years. Results may be due to decreases in drinking during pregnancy, decreases in disclosure of alcohol use by the mother, or more selective use of the discharge code. National hospital discharge databases may allow cost-effective monitoring of public health interventions that address rare conditions of the fetus and newborn.

Hospitalizations of newborns with folate-sensitive birth defects before and after fortification of foods with folic acid.

CONTEXT: The prevalence of neural tube defects is reduced in populations of women who receive folic acid supplementation. Since 1998, grain products in the United States have been fortified with folic acid. Fortification may have additional benefits by reducing the national prevalence of newborn hospitalizations for other folate-sensitive birth defects. OBJECTIVE: Our purpose with this work was to compare rates of hospitalizations of newborns with folate-sensitive birth defects before and after implementation of fortification of grains. METHOD: National hospital discharge data from the Healthcare Cost and Utilization Project were used to compute rates of newborn hospitalizations for selected birth defects per 10,000 live births in the United States. Newborn hospitalization rates involving congenital anomalies recognizable at birth were analyzed for 5 years before fortification of grains and 5 years after fortification. Additional analyses compared changes in newborn hospitalization rates for birth defects by race/ethnicity, income, insurance status, and region of the country. RESULTS: Newborn hospitalization rates for spina bifida decreased 21% from 1993-1997 to 1998-2002. Newborn hospitalization rates also decreased for anencephaly (20%) and limb-reduction defects (4%). Decline in hospitalizations for spina bifida occurred more often among Hispanic newborns (33%) than among white (13%) or black (21%) newborns. Decline in limb-reduction defects was seen primarily among blacks (11%). Findings using hospitalization data were similar to recent reports using birth defect surveillance systems with the exception of findings for orofacial clefts and conotruncal heart defects. No reductions were noted in newborn hospitalizations for these anomalies. CONCLUSIONS: Results from this ecological study fail to demonstrate substantial declines in newborn hospitalizations beyond those anticipated from a reduction in neural tube defects. The society-wide impact of the fortification program on birth defects and other health conditions should continue to be monitored.