Abstract
Background: Trisomy 13, also known as Patau syndrome, occurs in 1/10,000 live births. Trisomy 13 is traditionally considered "lethal" with death as an outcome to be expected quickly. With regard to treatment decisions, families may feel that they are being judged by the medical community and their perception of quality of life.
Purpose: This case describes an intrauterine growth restricted preterm female presenting with multiple dysmorphic features.
Methods: Using a case description as an example, the use of palliative care and alternative approaches to caregiving with the family of an infant with Trisomy 13 are explored.
Findings/Results: A definitive diagnosis of trisomy 13 was made and discussed with the family at day 4 of life. Palliative care was initially used along with life-extending care.
Implications for Practice: With progression of the disease palliative care comes more to the forefront to help relieve physical and emotional suffering for not only the infant but the family, too. Offering nontraditional opportunities can help create a legacy and allow the families to know that their baby's life had meaning.
Implications for Research: Providing caregiver information on the diagnosis and specialized palliative care may improve infant and family outcomes.