In a recently released issue of Pediatrics (10.1542/peds.2017-3651), Dr. Richard Goldstein and colleagues share results of a unique study examining rates of “Prolonged Grief Disorder” among mothers who suffered unexpected infant loss due to SIDS (sudden infant death syndrome). Prolonged Grief Disorder is a bereavement response that includes severe and prolonged yearning and emotional pain that impacts daily functioning and persists well beyond 6 months after a loss. The authors included two differing populations of SIDS-bereaved mothers in this study. Forty-nine mothers living in poverty in Cape Town, South Africa and on the Pine Ridge Indian Reservation in South Dakota were enrolled via an NIH (National Institutes of Health) funded study of women at high risk for infant loss, and 359 generally affluent mothers from the US, UK, Australia, New Zealand and the Netherlands were enrolled via parent mailing lists associated with the International Society for the Study and Prevention of Perinatal and Infant Death. Their findings are highly relevant for practicing pediatricians since SIDS is the leading cause of infant mortality beyond the neonatal period (ages 29-364 days).
The authors found no significant differences in either symptom profiles or risk for Prolonged Grief Disorder between the extremely poor cohort composed of Cape Town South Africans and Northern Plains Oglala Sioux, compared to the relatively affluent cohort recruited via the parent mailing lists. The methodological consequence of this finding is that the authors were able to combine their cohorts and summarize for the population as a whole. The human meaning of this finding is quite profound – worldwide, sharing a connection across huge demographic divides, mothers’ hearts and souls are as one in the incomprehensible experience of sudden and unexpected infant loss. Among studied mothers, 42.7% reported daily intrusive feelings of both yearning and emotional pain and 57.1% met criteria for Prolonged Grief Disorder at one year, and an overwhelming 41.3% met criteria in the third year after their bereavement. The authors identify symptoms which do recede with time, in comparison to those which are less likely to do so, and suggest that pediatricians can identify and address those symptoms that are more likely to be “stuck,” and make appropriate referrals. But in order to do so, we must know who has suffered a loss and is in need.
This article motivates me to make sure my maternal obstetrical history is complete, and that I have asked about all the mother’s other children, not just those in the room or in the home. Unless one is persistent, empathic and thorough, I believe it is too easy to miss prior bereavements and infant losses. A mother is unlikely to spontaneously bring up this topic, and she may have even transferred hospitals to avoid reminders of her deceased infant, yet the heavy burden remains with her and deeply impacts her life and her parenting. Although this article names frequent signs and symptoms, I wonder if it is best to use open-ended dialogue in trying to open the door to bereavement-related feelings. The authors specifically note that mothers objected to assurances about “acceptance” and “moving on,” and in fact some aspects of “not remembering” the infant as time passed were as painful as being able to remember, in terms of the mother’s own acceptance of the loss. This is an article not to miss for all of us who provide direct care – sudden unexpected infant loss is a heavy burden a mother may carry, and we can only help if we know about it.