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Surviving with trisomy 13: Provider and parent perspectives and the role of the pediatric palliative care program

Duc Chung1, Kristina Haynes2, Russell Haynes3

  • 1Department of Hospice and Palliative Medicine, UCSF Fresno, Fresno, California.

American Journal of Medical Genetics. Part A
|December 27, 2016
PubMed

Insights

Trisomy 13 (Patau syndrome) often has a poor prognosis. Integrating palliative care improved survival and quality of life for a medically complex child and their family.

Area of Science:

  • Genetics
  • Pediatrics
  • Palliative Care

Background:

  • Trisomy 13 (Patau syndrome) is a chromosomal disorder associated with significant multisystem anomalies and a generally poor prognosis.
  • Management of medically complex children with Trisomy 13 presents unique challenges for healthcare providers and families.

Observation:

  • This case study highlights the experience of a child with Trisomy 13 from both provider and parent viewpoints.
  • The integration of a specialized palliative care team was central to the care approach.

Findings:

  • A collaborative approach emphasizing hope, communication, and teamwork was implemented.
  • The palliative care integration resulted in enhanced survival for the child.
  • The intervention led to an improved perceived quality of life for both the patient and their family.

Implications:

  • This case demonstrates the significant benefits of palliative care in improving outcomes for children with Trisomy 13.
  • Effective communication and interdisciplinary teamwork are crucial for managing medically complex pediatric cases.
  • Palliative care can positively impact survival and quality of life in Trisomy 13, challenging the notion of universally poor prognosis.

Keywords:
palliative care

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