A Separate Peace.

Abstract

This past summer, a 4-month-old baby named Heidi with microcephaly and subsequent autonomic instability was hospitalized for 1 month in an intermediate care unit at a hospital on the eastern seaboard. She was diagnosed with microcephaly at 2 months of age at the same hospital. During her most recent hospitalization, Heidi presented with significant neuroirritability. Her parents felt uncomfortable having her return home unless she was sleeping through the night without needing any pain medications. The family and the medical team had different perspectives on the management of Heidi’s care. Both recognized that Heidi had a progressive, degenerative illness; however, her parents felt that her illness would progress to death a lot sooner than the medical team’s prediction that she could potentially live for longer than 6 months. The medical team and nursing staff involved in her care were emotionally impacted by this hospitalization in several different ways. This was evident in behavioral responses such as distress, anger, fear, and defensiveness. As the social worker supporting Heidi’s family, I found myself as a gatekeeper and holder of information as well as an advocate and educator. The rest of the care team, especially our nursing staff, felt a sense of protection over the child which affected their objectivity in approaching the child’s case. This was a unique situation where the family’s peace about their child’s limited life span clashed with the care team’s expectation that the family would still be coming to terms with her illness.