Impact of elective termination on the occurrence of severe birth defects identified in a hospital-based active
Emma G Thomas1,2, M Hassan Toufaily1,2, Marie-Noel Westgate1,2
1Active Malformations Surveillance Program, Department of Pediatric Newborn Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts.
Insights
Including elective terminations in malformation surveillance significantly impacts the identification of severe congenital anomalies. Excluding these cases can lead to undercounting severe malformations in newborn populations.
Area of Science:
- Medical Surveillance
- Reproductive Health
- Pediatric Malformations
Background:
- Malformation surveillance programs may underestimate the true prevalence of congenital anomalies if elective terminations are excluded.
- Accurate identification of malformations is crucial for public health monitoring and resource allocation.
Purpose of the Study:
- To determine the impact of including or excluding elective terminations on malformation surveillance data.
- To assess how changes in access to elective termination services affect the identification of malformed infants.
Main Methods:
- Reviewed pediatric examinations and autopsies of all newborn infants and elective terminations for structural abnormalities.
- Utilized a severity scale to categorize malformations.
- Analyzed data from a malformation surveillance program for two years before and after a temporary reduction in elective terminations.
Main Results:
- A significant decrease in terminated fetuses with malformations was observed after service interruption.
- No change in overall malformation prevalence rates was found.
- Significant reductions were noted in the identification of lethal/life-limiting and severe/handicapping malformations.
Conclusions:
- Inclusion of elective terminations in malformation surveillance is essential for accurately identifying infants with more severe congenital anomalies.
- Surveillance data are more comprehensive and representative when accounting for all pregnancy outcomes, including terminations.
Background:
The number of affected infants and the types of malformations identified by a malformation surveillance programs can be impacted if elective terminations for malformations are not included.
Methods:
The occurrence of malformations in all newborn infants was determined in a daily review of the findings in the pediatricians' examinations and those of all consultants. In addition, the findings in autopsies of all elective terminations were reviewed to identify all fetuses with structural abnormalities. A severity scale was used to subdivide the malformations. To establish the impact of elective termination, the malformed infants identified in the Active Malformations Surveillance Program at Brigham and Women's Hospital in Boston were analyzed for the 2 years before and after the hospital decreased significantly the number of elective terminations temporarily (1999-2000 vs. 2001-2002). The effect on the number of malformations identified at birth, as well as malformations of greater severity, was determined.
Results:
The number of terminated fetuses with malformations decreased dramatically after termination services were interrupted (p < 0.0001). There were no differences in the prevalence rates of all malformations in the 2 years before and after the change in access to elective terminations. However, there were significant decreases in the number of infants identified with lethal/life-limiting and severe/handicapping malformations.
Conclusion:
In the surveillance for malformations among newborn infants, the inclusion of malformed fetuses from elective terminations had a significant effect on the number of infants with the more severe malformations identified. Birth Defects Research (Part A) 106:659-666, 2016. © 2016 Wiley Periodicals, Inc.


