Legacy MattersWhen parents learn that their unborn child has a condition or a genetic abnormality that will prove fatal, many couples choose not to terminate the pregnancy.
For such parents, there is A Place to Turn When a Newborn is Fated to Die.
Traditionally, doctors and nurses dealt with babies born with fatal anomalies by whisking them away from their mothers to die. But in the 1970s, a perinatal bereavement movement began offering parents another way to deal with the death of a child at birth, by acknowledging the grief they feel and by creating family and religious rituals around a stillbirth or early death.
Drawing on that philosophy, at least 40 perinatal hospice programs have been started in the United States in the last decade.
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Families in hospice programs generally decide to let their children die without aggressive medical intervention, including feeding tubes, intravenous fluids and surgeries. They give medication to ease the child’s discomfort.
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“I want to go through this with my eyes open,” he said, explaining why he turned to the hospice program. “I want to feel every ounce of pain, of happiness, because if I avoid it now, it will come back to bite me. I want to experience grace. What does that mean, because it’s such a vague term?
“I’m still trying to figure it out. I think I’ll experience it when this event comes complete,” he said, as his voice cracked, “when she passes.”