PC1102: Single-center Review of Trisomy 18 Infant Outcomes and Parental Goals of Care

Background: The role of surgical interventions in patients with Trisomy 18 is controversial given the high mortality rate in the first year of life. Recent studies demonstrate that life-prolonging measures may extend the lifespan of infants with trisomy 18. This single-center study examines the relationship between parental goals of care, number of surgical interventions, number of congenital anomalies detected, length of initial hospitalization, and lifespan.

Methods: A retrospective chart review of 23 infants with trisomy 18 admitted between January 2010 and December 2020 was performed. Patients were grouped by parental goals of life-prolongation or comfort care as reported to the palliative care team. Mann Whitney U analyses were utilized to calculate statistical significance.

Results: A total of 23 infants with trisomy 18 fit the inclusion criteria for this study. 70% of parents chose life-prolongation measures (n=16) while 30% elected for comfort care (n=7). Within the first year of life, the life-prolongation group had a mortality rate of 35%, while the comfort care group had a mortality rate of 86%. Living patients (n=5) are now 4-12 years old and all had a parental goal of life-prolongation. Patients in the life-prolongation group had significantly longer initial hospitalizations (U= 9, P= < 0.001) and more congenital anomalies detected within their first hospitalization (U= 19.5, P= 0.012). In addition, the life-prolongation group had significantly more surgeries throughout their lifetime than comfort care infants (U=7; P= < 0.001). Lastly, the life-prolongation group had significantly longer lifespans than comfort care infants (U= 17, P= 0.008).

Conclusion: While the mortality rate for children with trisomy 18 remains high and comfort care is still commonly recommended, more parents in this study chose life-prolongation for their child’s goal of medical treatment. A parental goal of life-prolongation had a significant association with an increased number of surgical interventions and a prolonged lifespan of the child. These results emphasize the importance of ongoing conversations between parents and physicians regarding each patient’s individual condition and goal of care.