Problem
L.F., a newborn, was diagnosed with hypoplastic left heart syndrome. After a full explanation of the surgical options, the family opted for palliative care. The mother preferred never to see the baby again, because she feared bonding with her own child. The baby was in the NICU, but because of her parents' decision, was not receiving aggressive interventions. The parents were approached about the Butterfly Program, providing surrogate parents and moving the baby to the Butterfly Room; they agreed.
They decided to visit the baby the next day. She was wearing normal baby clothes, being cared for and appearing like any other baby. When they saw that the baby did not need highly skilled care, they felt that they could care for her themselves at home with the help of the Butterfly Program.
The next day, the parents took their daughter home. L.F. lived well there and visited many churches for blessings, went to numerous restaurants, had house guests, received several hospice visits, and was asymptomatic until her final day at two weeks of age, when she began to vomit and become intermittently cyanotic.
The Butterfly Team (nurse, social worker, and physician) was summoned to the home. Additional explanations of what was happening and assurances of the child's comfort were provided. The baby received one dose of morphine, but the family assessed that she did not need more. She died in her mother's arms eight hours after the first cyanotic episode.
How is the experience of loss unique in death of a child?