Lily's Story: STAR Syndrome.

BACKGROUND

Lily was born 7 years ago with an illness that did not have a name; she had only a constellation of anomalies. The hope of happiness that most parents experience when expecting a baby was lost halfway through my pregnancy when we heard the words "survival" and "termination of the pregnancy." Lily did survive and has taught us, her parents, and members of her medical team the meaning of courage and collaboration.

PURPOSE: This article describes our journey. Today that lesson has blossomed into a patient/parent/family engagement program changing the culture of healthcare and the future for hospitalized infants.

IMPLICATIONS FOR PRACTICE: We share our story so that others might learn from our experiences. Hope and survival are so important to parents and families and health professionals need to be aware that taking away hope can devastate a family.

IMPLICATIONS FOR RESEARCH: More research is needed about when a baby who was expected to die lives anyway and how that experience can best be supported for families. This is an area where the experience is unique and little is really known.