Caring for Caregivers: Implications for Providing Authentic Family-Centered Care

In this issue of Pediatrics, Fuller et al¹ provide compelling evidence that both the fathers and mothers of children born with major congenital anomalies have a higher risk of premature mortality. The increased paternal mortality is the new revelation. The authors looked at time to death and cause of death after the birth of an infant with major congenital anomalies. Data were harvested from multiple national registries in Denmark by using a robust methodologic approach.

The authors found an increased risk of both paternal and maternal mortality due to cardiovascular, endocrine, and metabolic causes. Behavioral health needs, including for substance and alcohol abuse, were higher. Distressingly, mothers of affected infants had an increased risk of death from unintentional injuries, violence, and other trauma. Notably, these are largely preventable causes of morbidity and mortality.

The authors’ analytic approach does not support drawing causal inferences related to circumstances arising beyond the newborn period, limiting the ability to generalize the conclusion that parenting an infant with complex medical needs can lead to increased premature mortality. However, it …

Address correspondence to Richard C. Antonelli, MD, MS, FAAP, Boston Children’s Hospital, 300 Longwood Ave, Boston, MA 02115. E-mail: richard.antonelli{at}childrens.harvard.edu