Increased mortality among parents of children with major congenital anomalies

1. Mothers and fathers of children with major congenital abnormalities were found to experience an overall increased risk of mortality as compared with parents of unaffected children.

2. Increased mortality occurred relatively early in the child’s life, and was primarily due to cardiovascular and metabolic diseases.

Evidence Rating Level: 2 (Good)

Study Rundown: Major congenital anomalies occur in 2-3% of the population in America and Europe, and may present lifelong challenges to caregivers to provide physical, financial, and emotional support. Existing literature on premature mortality in caregivers of children with major congenital abnormalities has been limited to mothers, as fathers are less likely to identify as primary caregivers when using self-reporting methodologies. To investigate early mortality of both mothers and fathers, this study culled data from the Danish National Patient Registry and followed nearly 2 million parents over a median follow-up time of 17.9 years. Compared to mothers of children without major congenital anomalies, mothers of affected children had an adjusted hazard ratio (aHR) of death of 1.20, fathers of unaffected infants had an aHR of 1.62, and fathers of affected children had an aHR of 1.76. Increased mortality was most commonly due to cardiovascular disease, followed by endocrine/metabolic conditions. The large sample size of this study, utilizing a national registry to minimize selection bias and ensure 100% follow-up rates, and considerable longevity of follow up all greatly add to the weight of the conclusions. One limitation of the study is that information regarding certain potential confounders (such as smoking) was not available. The results indicate that both mothers and fathers of children born with major congenital abnormalities are at increased risk of early mortality, and should be considered for intervention to support long term health.

Click to read the study in Pediatrics

Relevant Reading: Association between the birth of an infant with major congenital anomalies and subsequent risk of mortality in their mothers

In-Depth [prospective cohort]: In the study cohort, there were no major sociodemographic differences between parents with and without children with congenital anomalies. Covariates adjusted for included parent’s age, child’s birth year, parity, hypertension, previous mental health diagnosis, marital status, income quartile, education, and immigration status. Mothers of babies with multiorgan anomalies had an increased risk of mortality (aHR = 1.69 [95% CI: 1.27 to 2.24]) compared with mothers of children with single organ anomalies (aHR =1.16 [95% CI: 1.05 to 1.28]), a finding not replicated with fathers. Stratification revealed that mortality rates were highest during the first 10 years of the child’s life (aHRs for exposed mothers = 1.27 [95% CI: 1.04 to 1.56], for exposed fathers = 1.92 [95% CI: 1.66 to 2.23]), then mildly diminished thereafter. Suggested explanations for these results include chronic stress (known to affect cardiovascular and endocrine processes) and genetic predispositions shared by parent and child.

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