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Analysis of Mortality among Neonates and Children with Spina Bifida: An International Registry-Based Study, 2001-2012
Marian K Bakker1, Vijaya Kancherla2, Mark A Canfield3
1University of Groningen, University Medical Center Groningen, Department of Genetics, Eurocat Northern Netherlands, Groningen, The Netherlands.
Insights
Spina bifida significantly increases the risk of stillbirth and childhood mortality, despite medical advances. Folic acid interventions are crucial for preventing spina bifida and its associated mortality.
Area of Science:
- Public Health
- Pediatrics
- Genetics
Background:
- Despite medical progress, individuals with spina bifida face elevated risks of perinatal and postnatal mortality.
- Spina bifida remains a significant public health concern due to its impact on infant and child survival.
Purpose of the Study:
- To investigate stillbirth and mortality rates in infants and children diagnosed with spina bifida.
- To analyze mortality data across multiple countries to understand the global impact of spina bifida.
Main Methods:
- An observational study utilized data from 24 international surveillance registries.
- Included cases of spina bifida from livebirths, stillbirths, and elective terminations for fetal anomaly (ETOPFA).
- Mortality was calculated as deaths among liveborn cases, with prevalence estimated per 10,000 births.
Main Results:
- The first-week mortality proportion for spina bifida livebirths was 6.9% (2001-2012).
- Mortality was lower in countries permitting ETOPFA (5.9%) compared to those without (8.4%).
- Five-year survival rates ranged from 86% to 96% in Europe and North America.
Conclusions:
- A substantial proportion of stillbirths and childhood deaths are associated with spina bifida.
- Effective folic acid supplementation can prevent numerous spina bifida cases.
- Preventing spina bifida through folic acid interventions can significantly reduce associated childhood morbidity and mortality.
Background:
Medical advancements have resulted in better survival and life expectancy among those with spina bifida, but a significantly increased risk of perinatal and postnatal mortality for individuals with spina bifida remains.
Objectives:
To examine stillbirth and infant and child mortality among those affected by spina bifida using data from multiple countries.
Methods:
We conducted an observational study, using data from 24 population- and hospital-based surveillance registries in 18 countries contributing as members of the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). Cases of spina bifida that resulted in livebirths or stillbirths from 20 weeks' gestation or elective termination of pregnancy for fetal anomaly (ETOPFA) were included. Among liveborn spina bifida cases, we calculated mortality at different ages as number of deaths among liveborn cases divided by total number of liveborn cases with spina bifida. As a secondary outcome measure, we estimated the prevalence of spina bifida per 10 000 total births. The 95% confidence interval for the prevalence estimate was estimated using the Poisson approximation of binomial distribution.
Results:
Between years 2001 and 2012, the overall first-week mortality proportion was 6.9% (95% CI 6.3, 7.7) and was lower in programmes operating in countries with policies that allowed ETOPFA compared with their counterparts (5.9% vs. 8.4%). The majority of first-week mortality occurred on the first day of life. In programmes where information on long-term mortality was available through linkage to administrative databases, survival at 5 years of age was 90%-96% in Europe, and 86%-96% in North America.
Conclusions:
Our multi-country study showed a high proportion of stillbirth and infant and child deaths among those with spina bifida. Effective folic acid interventions could prevent many cases of spina bifida, thereby preventing associated childhood morbidity and mortality.
