Study Examines the Long-term Consequences for Siblings Who Lose an Infant Sibling

Little is known about the long-term effects of losing a sibling in the neonatal intensive care unit (NICU). A survivor sibling may encounter unforeseen emotional difficulties and developmental consequences. These difficulties may occur whether the siblings are born before or after the infant's death. A new study 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 (DHMC) surveyed siblings of children who died in the NICU between 1980 and 1990. The researchers interviewed 13 adults and 1 adolescent about their experiences as a child related to the death of their sibling. Participants were asked to share their memories associated with the event, including parental reactions to the death, their thoughts about the NICU itself, and what they experienced at home after the sibling's death.

The researchers found similarities between the surviving siblings, including a sense of confusion surrounding the memories of the event and high anxiety rates. Those siblings who were born after the child's death reported a lack of communication within the family about the death itself. Perhaps most striking, however, is the belief held by 50 percent of the siblings that their parents never mourned the loss of the child.

According to Dr. Fanos, "Many participants felt that counseling would have helped their parents." She and her colleagues believe that the results of this survey demonstrate the need for further research. She suggests that "medical providers and family members alike should consider psychological counseling to gain insight into the emotional responses to death in the NICU."

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 they lost in the NICU by lighting candles in the snow. Photographs were particularly important as 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, Ph.D., George A. Little, M.D., and William H. Edwards, M.D., appears in The Journal of Pediatrics, www.jpeds.com.