Cincinnati, OH, April 2, 2009--Little is known about the long-term effects of the death of a child in the neonatal intensive care unit (NICU) on survivor siblings. These siblings may encounter unforeseen emotional difficulties and developmental consequences that can occur whether the siblings are born before or after the infant's death. A new study soon to be published in The Journal of Pediatrics explores the psychological and emotional issues related to siblings of children who died in the NICU.
Dr. Joanna Fanos and colleagues from Dartmouth-Hitchcock Medical Center surveyed the siblings of children who died in the NICU between 1980 and 1990. The researchers interviewed 13 adults and 1 adolescent about their childhood experiences related to the death of their sibling. Participants were asked to share their memories associated with the death, including parental reactions, experiences at home, and thoughts about the NICU itself.
The researchers found similarities between the surviving siblings, including a sense of confusion surrounding the event. Siblings born after the child's death reported a lack of family communication about the death itself. Perhaps most striking is that half of the participants believed that their parents never mourned the loss of the child. Dr. Fanos suggests that medical providers should encourage family members to consider psychological counseling as a way to gain insight into the emotional responses to death in the NICU. She and her colleagues believe that the results of this survey demonstrate the need for further research.
The study also revealed that rituals, photographs, and shared memories were important parts of the healing process. One family, for example, celebrates the December birthdays of the two children who died in the NICU by lighting candles in the snow. Photographs were particularly important because they represented a symbolic link to the infant. As Dr. Fanos explains, "The sharing of rituals and photos fosters communication between the parents and siblings and allows a continuing bond with the deceased child."
The study, reported in "Candles in the Snow: Ritual and Memory for Siblings of Infants Who Died in the Intensive Care Nursery" by Joanna H. Fanos, PhD, George A. Little, MD, and William H. Edwards, MD, appears in The Journal of Pediatrics, DOI 10.1016/j.jpeds.2008.11.053, published by Elsevier.