Disagreement About Surgical Intervention in Trisomy 18

Kochan, Michael; Cho, Eunsung; Mercurio, Mark R.; Greco, Megan; Savarese, Anne; Falck, Alison

doi:10.1542/peds.2020-010686

Cited by 9 publications

(6 citation statements)

References 12 publications

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“…With the changing approach to care for patients with T13 or T18, providers may feel distress or disagree with the goals of care and treatment pathways families wish to pursue. 48 To appropriately counsel families, it is important that providers understand the values and goals of the family, as well as the anticipated outcomes and disease trajectory, for each fetus or neonate with T13 or T18. In this cohort, fewer than one-half of families met with a pediatric provider or multidisciplinary fetal care team during their pregnancy.…”

Section: Original Articlesmentioning

confidence: 99%

Perinatal Outcomes of Fetuses and Infants Diagnosed with Trisomy 13 or Trisomy 18

Cortezzo

Tolusso

Swarr

2022

The Journal of Pediatrics

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Section: Original Articlesmentioning

confidence: 99%

Perinatal Outcomes of Fetuses and Infants Diagnosed with Trisomy 13 or Trisomy 18

Cortezzo

Tolusso

Swarr

2022

The Journal of Pediatrics

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“…With the changing approach to care for patients with T13 and T18, providers may feel distress or may personally disagree with the goals of care and treatment pathways families wish to pursue. 50 It is important that providers understand the values and goals of the family, as well as the anticipated outcomes and disease trajectory, for each fetus or neonate with T13 or T18 to appropriately counsel families. In this cohort, less than half of families met with a pediatric provider or multidisciplinary fetal care team during their pregnancy.…”

Section: Discussionmentioning

confidence: 99%

Perinatal Outcomes of Fetuses and Infants Diagnosed with Trisomy 13 or Trisomy 18

Cortezzo

Tolusso

Swarr

2021

Preprint

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Objectives: To identify factors associated with adverse prenatal, perinatal and postnatal outcomes, and determine the utilization medical care for fetuses & infants with trisomy 13 (T13) and trisomy (T18). Study Design: This population-based retrospective cohort study included all prenatal and postnatal diagnoses of T13 or T18 in the Greater Cincinnati area from 1/1/12-12/31/18. Overall survival, survival to hospital discharge, approach to medical management, and maternal, fetal and neonatal characteristics are analyzed. Results: 124 pregnancies (125 fetuses) were identified, which resulted in 72 liveborn infants. Male fetal sex and hydrops were associated with a higher rate of spontaneous loss. The median length of survival was 7 days (95% CI, 0-18 days) and 29 days (95% CI, 2-115 days), for infants with T13 and T18, respectively. Of the 27 infants who were alive at 1 month of age, 14 (52%) were alive at 1 year of age. Only the trisomy type, chosen goals of care (comfort care), and extremely low birthweight were associated with overall length of survival. A high degree of variability existed in the use of medical services, with 28% of infants undergoing at least one surgical procedure and some children requiring repeated (up to 29) or prolonged hospitalization (> 1 year). Conclusions: Although many infants with T13 or T18 did not survive past the first week of life, up to 25% of infants lived for more than one year. Length of survival for an individual infant cannot be easily predicted, and surviving infants have high health care utilization throughout their lifespan.

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“…Increasingly, perhaps, there is a recognition that value judgments about anticipated disability in an infant are usually best made by parents. Interventions for children with T13 and T18 are now seen by many physicians to be ethically permissible, and thus left to the discretion of informed parents, even if viewed by some of those same physicians as inadvisable [49].…”

Section: Ethical Considerations In Decision Making In the Care Of Chi...mentioning

confidence: 99%

The common trisomy syndromes, their cardiac implications, and ethical considerations in care

Kosiv

Mercurio

Carey

2023

Current Opinion in Pediatrics

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Purpose of review To review the incidence of congenital heart disease in the trisomies, highlight the history of cardiac surgery in trisomy 21 comparing it to the increase in cardiac surgery in trisomies 13 and 18, discuss ethical issues specific to trisomies 13 and 18, and suggest a pathway of shared decision-making in the management of congenital heart disease in trisomy 13 and 18, specifically congenital heart surgery. Recent findings Congenital heart disease is prevalent in the trisomies and the management of these defects, especially surgical intervention, has changed. In the late 20th century, survival after cardiac surgery in trisomy 21 vastly improved, significantly decreasing morbidity and mortality secondary to pulmonary hypertension. Similarly, procedures and surgeries have been performed with increasing frequency in trisomy 13 and 18 patients and concomitantly, survival in this patient population is increasing. Yet across the United States, the willingness to perform cardiac surgery in trisomy 13 and 18 is variable, and there is ethical controversy about the correct action to take. To address this concern, a shared decision-making approach with an informed parent(s) is advised. Summary As the care and management of congenital heart disease changed in trisomy 21, so too it has with trisomy 13 and 18. Physicians and parents should develop goal-directed treatment plans balancing the risk versus benefit and consider cardiac surgical repair if feasible and beneficial.

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Disagreement About Surgical Intervention in Trisomy 18

Cited by 9 publications

References 12 publications

Perinatal Outcomes of Fetuses and Infants Diagnosed with Trisomy 13 or Trisomy 18

Perinatal Outcomes of Fetuses and Infants Diagnosed with Trisomy 13 or Trisomy 18

Perinatal Outcomes of Fetuses and Infants Diagnosed with Trisomy 13 or Trisomy 18

The common trisomy syndromes, their cardiac implications, and ethical considerations in care

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