Outcomes of patients with trisomy 13 and 18 in a center with a dedicated perinatal palliative care program
Sinead Brady1, Bryn McNamee-Tweed2, Yuan S Zhang3
1Division of Neonatal and Perinatal Medicine, Department of Pediatrics, Columbia University Vagelos College of Physicians and Surgeons and New York-Presbyterian Morgan Stanley Children's Hospital, New York, NY, USA. Sb4028@cumc.columbia.edu.
Insights
Perinatal palliative care programs can support families facing trisomy 13 (T13) or trisomy 18 (T18). Consistent consultation practices may prevent increased medical interventions over time for these complex pregnancies.
Area of Science:
- Perinatal Medicine
- Genetics
- Palliative Care
Background:
- Trisomy 13 (T13) and Trisomy 18 (T18) are severe chromosomal abnormalities.
- Management of these conditions presents complex ethical and clinical challenges for families and healthcare providers.
Purpose of the Study:
- To evaluate outcomes for pregnancies with T13 or T18 managed within a dedicated perinatal palliative care program.
- To assess the impact of a Neonatal Comfort Care Program (NCCP) on clinical decision-making.
Main Methods:
- Retrospective cohort study at a single center (Columbia University Irving Medical Center) from 2008-2024.
- Included pregnancies with T13 or T18 where families chose to continue the pregnancy.
- Analyzed data on liveborn infants and parental decisions regarding care.
Main Results:
- 109 pregnancies studied, resulting in 68 liveborn infants.
- 69.9% of families meeting with the NCCP prior to delivery opted for comfort care.
- No increasing trend in medical interventions observed over the 17-year study period.
Conclusions:
- Consistent consultation by the NCCP may explain the lack of trend toward increased intervention.
- This approach differs from trends observed at other institutions.
- Perinatal palliative care can provide consistent support and guidance for families managing T13/T18.
Introduction:
The objective of this study is to assess outcomes of pregnancies complicated by trisomy 13(T13) or trisomy 18(T18) and infants with T13 and T18, who were managed in a center with a perinatal palliative care program.
Methods:
This is a single center retrospective cohort study of neonates with T13 or T18 and pregnancies complicated by T13 or T18 in which families opted to continue the pregnancy, that were followed at Columbia University Irving Medical Center(CUIMC) between 2008 and 2024.
Results:
There were 109 pregnancies that resulted in 68 liveborn infants. Of those who met with the Neonatal Comfort Care Program(NCCP) prior to delivery, 69.9% opted for comfort care. There was no trend toward more intervention over a span of 17 years.
Conclusion:
Differing from other institutions, the lack of trend toward more intervention in patients with T13 and T18 at CUIMC, may be due to the consistency of consultation practice by the NCCP.
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