# Trisomy 18 — GCMD Library living collection

Everything in the library about trisomy 18 — built automatically from dossiers that name it.

Updated: n/a · 7 episodes · 116 cited statements

## Episodes
### Fundamentals
- [Introduction - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18](https://library.globalcastmd.com/watch/introduction-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9501) — video · 2:14 · [machine version](https://library.globalcastmd.com/watch/introduction-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9501.md)

### Diagnosis & Workup
- [Mallory Hoffman, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500) — video · 29:34 · [machine version](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500.md)

### Medical Management
- [James Cnota, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499) — video · 31:06 · [machine version](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499.md)

### Surgical Management
- [Laura Glaganski, MD & Jagroop (Rupi) Parikh - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502) — video · 24:57 · [machine version](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502.md)

### Evidence & Research
- [Dan Swarr, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498) — video · 26:39 · [machine version](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498.md)

### In-Depth Reviews
- [John Carey, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505) — video · 31:31 · [machine version](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505.md)

### Patient & Family Education
- [Natasha Henner, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504) — video · 33:42 · [machine version](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504.md)

## Chapters
- [0:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=0) Introduction of Dr. Daniel Swarr (Ep 1)
- [0:28](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=28) Historical context and early literature on trisomy 13 and 18 (Ep 1)
- [4:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=240) Conventional approach and changing perspectives (Ep 1)
- [8:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=480) Ontario study methodology and survival data (Ep 1)
- [13:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=780) Surgical interventions in the Ontario cohort (Ep 1)
- [15:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=900) Cincinnati study methodology and pregnancy outcomes (Ep 1)
- [18:20](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1100) Cincinnati prenatal and postnatal diagnosis patterns (Ep 1)
- [20:50](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1250) Cincinnati survival data and factors associated with mortality (Ep 1)
- [22:44](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1364) Discussion: survival trends and prenatal vs postnatal diagnosis (Ep 1)
- [0:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=0) Introduction of Dr. James Cnota (Ep 2)
- [0:45](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=45) Epidemiology and Prenatal Diagnosis of CHD in Trisomy 13/18 (Ep 2)
- [4:40](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=280) Distribution of Cardiac Lesions by Trisomy Type (Ep 2)
- [8:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=480) Non-Cardiac Factors Affecting Surgical Risk (Ep 2)
- [12:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=720) Clinical Manifestations and Pulmonary Hypertension (Ep 2)
- [16:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=960) Trends in Cardiac Surgery and Multi-Center Outcomes (Ep 2)
- [20:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1200) AATS Guidelines for Surgical Decision-Making (Ep 2)
- [25:20](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1520) Catheter-Based Interventions and Cincinnati Approach (Ep 2)
- [27:09](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1629) Q&A: Case Selection and Pulmonary Hypertension Assessment (Ep 2)
- [0:00](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=0) Introduction of Dr. Hoffman (Ep 3)
- [0:36](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=36) Prenatal counseling, imaging review, and management options for trisomy 13/18 (Ep 3)
- [14:22](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=862) Impact of changing legislation on counseling and access (Ep 3)
- [18:10](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1090) Maternal morbidity and cesarean section risks (Ep 3)
- [21:03](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1263) Shared decision-making, serial counseling, and family wishes (Ep 3)
- [25:23](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1523) NIPT accuracy, false positives/negatives, and diagnostic odyssey (Ep 3)
- [0:00](https://library.globalcastmd.com/watch/introduction-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9501?t=0) Webinar Introduction and Agenda Overview (Ep 4)
- [0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0) Surgical Considerations for Trisomy 13 and 18: Common Procedures, Mortality Risk Factors, and Airway Findings (Ep 5)
- [14:13](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=853) Anesthetic Considerations: Preoperative Planning, Intraoperative Management, and Opioid-Sparing Strategies (Ep 5)
- [0:01](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1) Introduction of Dr. Natasha Henner (Ep 6)
- [0:58](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=58) Case presentation and factors shaping parental psychological state (Ep 6)
- [4:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=240) Current outcomes data and clinician attitudes (Ep 6)
- [8:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=480) Defining life-limiting conditions and experimental therapy (Ep 6)
- [12:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=720) Reflective questions for clinicians (Ep 6)
- [15:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=900) Practice cohesion and institutional positioning (Ep 6)
- [18:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1080) Parental framing and social media influence (Ep 6)
- [21:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1260) Communication strategies: risk stratification and message framing (Ep 6)
- [24:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1440) Chronic critical illness, parent-centered outcomes, and case examples (Ep 6)
- [25:56](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1556) Audience Q&A: social media, clinician-parent alignment, and pain management (Ep 6)
- [0:00](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=0) Introduction of Dr. John Carey (Ep 7)
- [1:21](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=81) Personal connection to SOFT and historical context (Ep 7)
- [5:20](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=320) Paradigm shift from conventional non-intervention (Ep 7)

## Statements
Every statement is attributed, typed, and timestamped; the link is the citation.
- "Tomiki Kosho published a 2006 paper in American Journal of Medical Genetics where he offered 24 families in Japan full intervention for trisomy 18 (though only ductus ligation was available), all 24 chose full intervention, 22/24 survived first week, and 6/24 survived first year." — John Carey (host_summary) [Ep 7 · 5:20](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=320)
- "In a 2008 Pediatrics paper, McGraw and Perlman polled New York neonatologists with a case where over half indicated they would not resuscitate a baby with trisomy 18 and VSD in the delivery room." — John Carey (host_summary) [Ep 7 · 6:20](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=380)
- "A 2016 American Journal of Medical Genetics survey of neonatologists showed 60% said active treatment of fetus/newborn with trisomy 18 is futile, 45% said trisomy 18 is incompatible with life, and over 50% said infant should not be resuscitated." — John Carey (host_summary) [Ep 7 · 9:40](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=580)
- "In the TRIE study polling of neonatologists representing over 40 NICUs, almost 70% felt trisomy 13/18 are compatible with life and providing interventions prolonged survival, but about a third felt children could not live a meaningful life." — John Carey (epidemiological) [Ep 7 · 10:40](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=640)
- "Janvier's paper in Pediatrics polling social networks found over 400 families recognized challenges but saw joy and felt there was good quality of life in children with trisomy 13/18." — John Carey (host_summary) [Ep 7 · 15:00](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=900)
- "Population studies as of 2014 showed about 50% or higher of children with trisomy 13/18 died in first week of life, and one-year survival ranged from 0-2%, averaging about 5% (1 in 20 surviving first year)." — John Carey (host_summary) [Ep 7 · 18:20](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1100)
- "Meyer's multi-state study showed 1-year survival of 13% for trisomy 18 and 11% for trisomy 13, a marked contrast to earlier population studies." — John Carey (host_summary) [Ep 7 · 19:20](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1160)
- "The Journal of Pediatrics study by Cortezo, Leandra, and Dan Swar (population retrospective cohort) demonstrated that intervention does increase survival in trisomy 13/18." — John Carey (host_summary) [Ep 7 · 20:00](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1200)
- "Ben Wilfond's 2019 paper in Hastings proposed a bioethical standard based on the moral value of the caring relationship between parent and child as an organizing principle for decision-making." — John Carey (host_summary) [Ep 7 · 21:40](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1300)
- "Kosho's American Journal of Medical Genetics paper appendix contains more than 50 paragraphs or sentences about parents and their perspectives on caring for children with trisomy 13/18." — John Carey (host_summary) [Ep 7 · 24:10](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1450)
- "Carey and colleagues polled 46 families of children with trisomy 18 at a SOFT conference about their stories and published findings in American Journal of Medical Genetics." — John Carey (epidemiological) [Ep 7 · 24:50](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1490)
- "The AATS (American Association of Thoracic Surgeons) recommendations state that decisions should not be based solely on presence of trisomy 13/18, but instead made case-by-case considering severity of heart disease and presence of other anomalies." — John Carey (host_summary) [Ep 7 · 22:40](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1360)
- "In a previous study only about a third of cardiologists discussed cardiac surgery prenatally for trisomy 13/18, but in Kosov's recent study over 60% did (compared to almost 100% for trisomy 21)." — John Carey (host_summary) [Ep 7 · 25:30](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1530)
- "SOFT has a surgery registry with hundreds of children recorded who have had various surgeries, including 201 families with cardiac surgery for trisomy 18 and almost 40 for trisomy 13, most performed in last 12 years." — John Carey (epidemiological) [Ep 7 · 26:20](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1580)
- "In a study polling families with trisomy 13 from a Facebook database, 3 individuals walked unassisted, usually after age 6." — John Carey (clinical) [Ep 7 · 27:10](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1630)
- "The TRIE study is a prospective longitudinal multi-NICU study investigating survival outcomes in trisomy 13/18, obtaining parent perspective through qualitative research, examining NICU experience and first year of life." — John Carey (clinical) [Ep 7 · 28:56](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1736)
- "The TRIE study has 20 centers committed to participate (all but 2 from neonatal Research Network), which would represent 20% of all live births with trisomy 13/18 in America, including those choosing comfort care or intervention." — John Carey (epidemiological) [Ep 7 · 30:00](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1800)
- "Current data show 6-19% of children with trisomy 13/18 survive the first year, and intensive intervention including cardiac surgery improves one-year survival. Greater than 5-year survival is greater than 10% of those born." — John Carey (host_summary) [Ep 7 · 27:50](https://library.globalcastmd.com/watch/john-carey-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9505?t=1670)
- "Trisomy 13 and 18 present unique challenges and require multidisciplinary and individualized approaches to provide the best possible outcomes for patients and families." — Leandra Tousso (opinion) [Ep 4 · 0:00](https://library.globalcastmd.com/watch/introduction-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9501?t=0)
- "23% of patients with trisomy 13 and 18% of patients with trisomy 18 underwent surgery in the Ontario longitudinal population study." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "41 children with trisomy 13 underwent 135 surgical procedures; 39% had one lifetime procedure, but 15 children had four or more lifetime procedures." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "35 children with trisomy 18 underwent 92 surgical procedures." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "Median survival after first surgery was more than one year in all organ system categories except eye surgeries and cardiac surgeries in trisomy 18." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "In the Indiana retrospective study (1990–2020), 53% of 117 patients underwent a procedure, with median age of first procedure 65 days." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "Higher birth weight and later gestational age were associated with lower surgical mortality in trisomy 13/18." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "Patients with other chromosome 18 variants (including mosaicism) had lower surgical mortality." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "General surgical anomalies (including esophageal atresia) were associated with higher surgical mortality." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "Neurologic procedures, ENT procedures, abdominal wall defects, genitourinary procedures, and endocrine comorbidities were not associated with increased surgical mortality." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "In the Cincinnati Children's bronchoscopy series (2011–2021), all patients with trisomy 13 had more than three significant airway findings, and most trisomy 18 patients had two or more significant findings." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "65% of trisomy 13/18 patients who underwent bronchoscopy at Cincinnati Children's required tracheostomy, and almost all required mechanical ventilation." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "Previous studies showed a tracheostomy rate around 17% in trisomy 13/18, but the Cincinnati series found 65% in patients who underwent airway evaluation." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "Tracheomalacia improves with time and growth, but severe malacia often requires tracheostomy and long-term mechanical ventilation." — Laura Glaganski (clinical) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "In a pooled analysis of 70 trisomy 18 patients with hepatoblastoma, 64% had surgical treatment; tumors were more solitary, less multifocal, and smaller overall." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "Only one-fifth of hepatoblastomas in trisomy 18 were identified through screening." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "The most common reasons patients with trisomy 18 and hepatoblastoma did not pursue surgery were severe cardiopulmonary comorbidities, advanced hepatoblastoma, and family decision." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "Five-year survival for trisomy 18 patients with hepatoblastoma receiving multimodal treatment was 43.7%, compared to 76.6% in patients without trisomy 18." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "Patients with trisomy 18 and hepatoblastoma have undergone liver transplant to provide curative treatment." — Laura Glaganski (host_summary) [Ep 5 · 0:00](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=0)
- "Trisomy 13/18 patients cannot be taken care of in an ambulatory surgery setting due to their comorbidities; they require inpatient care with multidisciplinary and subspecialty emergency care available." — Jagroop (Rupi) Parikh (clinical) [Ep 5 · 14:13](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=853)
- "Preoperatively, anesthesia requires recent EKG, echo, and cardiology visit; all patients come for an anesthesia consult ahead of time to avoid day-of-surgery cancellations." — Jagroop (Rupi) Parikh (clinical) [Ep 5 · 14:13](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=853)
- "Mask ventilation in trisomy 13/18 patients was found to be nearly 30-fold higher in difficulty compared to other patients of their age and weight." — Jagroop (Rupi) Parikh (host_summary) [Ep 5 · 14:13](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=853)
- "Careful inductions are critical in trisomy 13/18 to avoid hypercarbia and pulmonary hypertension, which is very challenging to manage intraoperatively." — Jagroop (Rupi) Parikh (clinical) [Ep 5 · 14:13](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=853)
- "Postoperatively, managing opioids is important to prevent hypoxia and hypercarbia in patients with central and obstructive sleep apnea." — Jagroop (Rupi) Parikh (clinical) [Ep 5 · 14:13](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=853)
- "Opioid-free anesthetics using adjuvants (IV Tylenol, Toradol) and regional anesthesia (caudal, nerve blocks) can eliminate postoperative apnea risk." — Jagroop (Rupi) Parikh (clinical) [Ep 5 · 14:13](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=853)
- "Elective surgeries like G-tube placement can be delayed following planned cardiac repair to avoid anesthetic risk." — Laura Glaganski (clinical) [Ep 5 · 14:13](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=853)
- "The preference is for G-tubes over GJ-tubes due to risk of perforation with GJ-tubes; a 5 kg weight cutoff is used at this institution." — Laura Glaganski (clinical) [Ep 5 · 14:13](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=853)
- "For low birth weight children needing post-pyloric feeding, a fluoroscopic nasojejunal tube can be placed to allow growth before GJ-tube placement." — Laura Glaganski (clinical) [Ep 5 · 14:13](https://library.globalcastmd.com/watch/laura-glaganski-md-jagroop-parikh-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9502?t=853)
- "The majority of infants with trisomy 13/18 still die within the first year of life, influenced by patient phenotype, parental choice, and local institutional practices." — Natasha Henner (epidemiological) [Ep 6 · 4:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=240)
- "There are higher rates of live-born infants with trisomy 13/18, and birth by C-section accounts for about 60 to 70% of all cases." — Natasha Henner (epidemiological) [Ep 6 · 4:20](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=260)
- "With more therapies, there are more long-term survivors; surgical trends are rapidly increasing." — Natasha Henner (epidemiological) [Ep 6 · 4:40](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=280)
- "Updated reported survival is about 40% to NICU discharge and over 25% to one year; some institutions report even higher survival." — Natasha Henner (epidemiological) [Ep 6 · 4:55](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=295)
- "Futility is a flawed ethical construct and is framed by the outcomes clinicians witness." — Natasha Henner (opinion) [Ep 6 · 6:20](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=380)
- "Developmental potential in trisomy 13/18 is probably not higher than 12 to 15 months, but parents assign varied importance to this, especially when told most children die within the first year." — Natasha Henner (clinical) [Ep 6 · 7:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=420)
- "Clinician distress around trisomy 13/18 care is important but changeable and can turn into something else." — Natasha Henner (opinion) [Ep 6 · 7:25](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=445)
- "Not acting upon something based on prognosis has an ongoing impact on that prognosis (self-fulfilling prophecy)." — Natasha Henner (opinion) [Ep 6 · 8:20](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=500)
- "If throughout medical and nursing school we learn that babies with trisomies look like malformed children in grainy pictures, we might treat them as less than human." — Natasha Henner (opinion) [Ep 6 · 10:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=600)
- "A 2023 consensus report states that for patients who are ventilator dependent heading into cardiovascular surgery, it is reasonable to discuss a possible risk of tracheostomy and chronic mechanical ventilation as part of counseling." — Natasha Henner (host_summary) [Ep 6 · 17:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1020)
- "Some decisions should be easily decoupled (mode of delivery, level of neonatal care, trial of CPAP vs. chronic mechanical ventilation), but others should be closely linked (cardiac repair with possible tracheostomy)." — Natasha Henner (opinion) [Ep 6 · 17:30](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1050)
- "All efforts should be made to turn surgical cardiac repair babies into long-term survivors, guided by outcomes and the overall health of each heart center." — Natasha Henner (opinion) [Ep 6 · 18:20](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1100)
- "When the same outcomes were described with a survival versus a mortality frame, patients picked a different care option (citing classic cancer treatment study)." — Natasha Henner (host_summary) [Ep 6 · 22:20](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1340)
- "It is possible that we conflate truthfulness and pessimism and are too brutal in talking about the truth, which is what parents tend to remember." — Natasha Henner (opinion) [Ep 6 · 23:00](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1380)
- "Clinicians are much more pessimistic about outcomes in almost all patient populations compared to parents, who tend to have a more positive view of the future." — Natasha Henner (host_summary) [Ep 6 · 23:20](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1400)
- "Multiple data show that parents probably do not regret their decisions, so clinicians may not need to worry about it as much as they do." — Natasha Henner (host_summary) [Ep 6 · 23:40](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1420)
- "Chronic critical illness is defined as remaining in the NICU for greater than 14 or 28 days, having chronic multi-organ conditions, or needing one or more technologies that tend to be lifelong." — Natasha Henner (clinical) [Ep 6 · 24:20](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1460)
- "Closing a VSD or supporting a baby with chronic mechanical ventilation may help with dyspnea, improve sleep and state regulation, improve growth, and help the child reach whatever developmental potential they were meant to reach." — Natasha Henner (clinical) [Ep 6 · 24:10](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1450)
- "Prematurity, single ventricle disease, cardiopulmonary failure requiring ECMO, and cancer-directed therapy may all preclude treatment possibilities and mean a shorter life; most centers would advise against these interventions." — Natasha Henner (clinical) [Ep 6 · 25:20](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1520)
- "Some places are putting kids on ECMO specifically post-cardiac repair and operating on kids with liver tumors with more successful outcomes." — Natasha Henner (clinical) [Ep 6 · 25:40](https://library.globalcastmd.com/watch/natasha-henner-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9504?t=1540)
- "13% of patients with trisomy 13 or trisomy 18 had preterm labor, not significantly different from the general population rate of about 10%." — Mallory Hoffman (epidemiological) [Ep 3 · 0:36](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=36)
- "Polyhydramnios in trisomy 13/18 can result from GI blockage, micrognathia preventing swallowing, or brain differences affecting swallowing signals." — Mallory Hoffman (clinical) [Ep 3 · 0:36](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=36)
- "Amnio-reduction uses a 20-gauge spinal needle and may remove several liters of amniotic fluid to relieve uterine stretch and prolong pregnancy." — Mallory Hoffman (clinical) [Ep 3 · 0:36](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=36)
- "The risk for stillbirth in trisomy 13/18 once in the third trimester is about 13%." — Mallory Hoffman (epidemiological) [Ep 3 · 0:36](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=36)
- "Non-stress tests are recommended twice weekly to help detect fetal distress earlier, though they are not perfect for preventing stillbirth." — Mallory Hoffman (clinical) [Ep 3 · 0:36](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=36)
- "Growth restriction and Doppler abnormalities may prompt earlier delivery timing." — Mallory Hoffman (clinical) [Ep 3 · 0:36](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=36)
- "The cesarean section rate for trisomy 13/18 pregnancies is 48%, compared to 32% in the general US population." — Mallory Hoffman (epidemiological) [Ep 3 · 0:36](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=36)
- "Increased cesarean section risk in trisomy 13/18 may be related to smaller babies, placentas that don't tolerate labor well, or structural differences like omphalocele or enlarged head size." — Mallory Hoffman (clinical) [Ep 3 · 0:36](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=36)
- "Patients at a fetal care center are more selected toward those interested in interventions after delivery, compared to general MFM practices." — Mallory Hoffman (opinion) [Ep 3 · 14:50](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=890)
- "Financial limitations and late diagnosis can restrict access to out-of-state termination, leading more patients to choose comfort care." — Mallory Hoffman (opinion) [Ep 3 · 14:50](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=890)
- "Some OB providers still counsel that comfort care is the only option for trisomy 13/18, reflecting outdated teaching that these are uniformly lethal diagnoses." — Mallory Hoffman (opinion) [Ep 3 · 16:48](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1008)
- "Medical school teaching historically presented trisomy 13/18 as lethal, with survivors assumed to be mosaic; more recent evidence shows full trisomy cases can survive beyond one year with support." — Mallory Hoffman (opinion) [Ep 3 · 16:48](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1008)
- "Ohio has a ban on termination for Down syndrome (trisomy 21), which has led some clinics to require amniocentesis confirmation for high-risk trisomy 13/18 screens to ensure it is not trisomy 21." (guideline) [Ep 3 · 18:48](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1128)
- "Rates of preeclampsia are higher in pregnancies with abnormal placentas, which is typical in trisomy 13/18." — Mallory Hoffman (clinical) [Ep 3 · 20:11](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1211)
- "Classical cesarean incisions (vertical on the uterus) do not heal as well as low transverse incisions and require preterm cesarean sections in all future pregnancies." — Mallory Hoffman (clinical) [Ep 3 · 20:11](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1211)
- "ACOG supports cesarean section on maternal request, meaning any mother who requests a C-section can have one even without a fetal indication." — Mallory Hoffman (guideline) [Ep 3 · 22:05](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1325)
- "In inductions with no fetal monitoring, the baby is often still born alive." — Mallory Hoffman (clinical) [Ep 3 · 22:05](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1325)
- "Families commonly change their minds multiple times during pregnancy and even during labor regarding their care preferences." — Mallory Hoffman (opinion) [Ep 3 · 22:05](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1325)
- "NIPT performs best for trisomy 21, then less well for trisomy 18, and least well for trisomy 13, partly due to technical factors and partly due to disease prevalence affecting positive predictive value." (clinical) [Ep 3 · 25:42](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1542)
- "NIPT tests free placental DNA, not fetal DNA, so false positives may reflect confined placental mosaicism rather than true fetal abnormality." (clinical) [Ep 3 · 25:42](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1542)
- "False positive NIPT results cause significant stress, often occurring in a diagnostic gray zone between CVS and amniocentesis timing." (opinion) [Ep 3 · 25:42](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1542)
- "Even after a low-risk amniocentesis following high-risk NIPT, growth scans in the third trimester are recommended due to potential placental impact on fetal growth." — Mallory Hoffman (clinical) [Ep 3 · 29:06](https://library.globalcastmd.com/watch/mallory-hoffman-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9500?t=1746)
- "CHD is present in 80 to 90% of children with trisomy 13 and 18, with all types present ranging from mild to moderate to severe in complexity." — James Cnota (epidemiological) [Ep 2 · 1:30](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=90)
- "The complexity seen in prenatal cohorts is typically more severe than in postnatal cohorts, which influences counseling and outcomes." — James Cnota (clinical) [Ep 2 · 1:50](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=110)
- "Polyvalvular dysplasia (redundant and thickened valve) is a hallmark of trisomy 13-18, can affect any of the four cardiac valves, and typically is not an important driver of cardiac symptoms but points toward genetic diagnosis." — James Cnota (clinical) [Ep 2 · 2:10](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=130)
- "In trisomy 13, the most common lesions are patent ductus arteriosus (32%), atrial septal defects (27%), and ventricular septal defects (28%), all resulting in left-to-right shunting." — James Cnota (epidemiological) [Ep 2 · 4:40](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=280)
- "Tetralogy of Fallot is the most common right-to-left shunt in trisomy 13, resulting in cyanosis depending on severity." — James Cnota (clinical) [Ep 2 · 5:20](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=320)
- "In trisomy 18, ventricular septal defect is by far the most prevalent cardiac diagnosis." — James Cnota (epidemiological) [Ep 2 · 5:45](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=345)
- "There is a very steep inflection in survival as gestational age increases for cardiac patients, with a particularly large gap between cardiac and non-cardiac patients in the 28 to 33 weeks gestation range." — James Cnota (clinical) [Ep 2 · 8:40](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=520)
- "The airway is a challenging problem for cardiac surgery and can complicate liberating patients from mechanical ventilation after surgery for simple shunts." — James Cnota (clinical) [Ep 2 · 10:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=600)
- "Pulmonary hypertension in trisomy 13/18 is unique in that it is early and accelerated in onset, which is guiding current trends in timing of cardiac surgery." — James Cnota (clinical) [Ep 2 · 10:25](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=625)
- "Myocardial dysfunction seems to be more common in trisomy 13/18 patients and adds risk to cardiac interventions (institutional observation being investigated for publication)." — James Cnota (clinical) [Ep 2 · 10:50](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=650)
- "Some babies with trisomy 13/18 do not have the normal physiologic drop in pulmonary vascular resistance, which greatly increases surgical risk." — James Cnota (clinical) [Ep 2 · 14:10](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=850)
- "For children with large VSD without trisomy 13/18, fixed pulmonary vascular resistance is not a concern until well into the first year of life, but in trisomy 13/18 this can happen much earlier in the first months." — James Cnota (clinical) [Ep 2 · 14:35](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=875)
- "Multi-center FIS database data show a clear trend of increasing numbers of cardiac surgeries being offered to trisomy 13/18 patients, with 74 centers involved." — James Cnota (epidemiological) [Ep 2 · 16:40](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1000)
- "In the most contemporary multi-center dataset, only 12% of trisomy 13 and 17% of trisomy 18 patients underwent cardiac surgery." — James Cnota (epidemiological) [Ep 2 · 17:30](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1050)
- "Inpatient operative survival to discharge was over 90% for both trisomy 13 and 18 in the multi-center study." — James Cnota (epidemiological) [Ep 2 · 17:55](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1075)
- "The 2023 AATS manuscript recommends that for infants with mild to moderate complexity CHD confined to hospital, cardiac surgery is reasonable if the hemodynamic consequence prohibits discharge." — James Cnota (host_summary) [Ep 2 · 20:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1200)
- "For infants with severe complexity and single ventricle CHD, the AATS recommendation is that it might be reasonable to not offer cardiac surgery due to anticipated poor outcomes related to pulmonary vascular disease and respiratory function." — James Cnota (host_summary) [Ep 2 · 21:20](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1280)
- "For patients with mild to moderate complexity CHD who are at home or need recurrent admissions, timely elective cardiac repair is reasonable according to AATS guidelines." — James Cnota (host_summary) [Ep 2 · 22:20](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1340)
- "AATS guidelines recommend that cardiac surgery involving cardiopulmonary bypass might be considered once other defects (such as esophageal atresia) are adequately addressed." — James Cnota (host_summary) [Ep 2 · 23:10](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1390)
- "Most PDAs in trisomy babies can be closed in the cath lab today, though some require surgical ligation based on ductal morphology." — James Cnota (clinical) [Ep 2 · 23:40](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1420)
- "For ventilator-dependent patients, repair of mild to moderate complexity CHD may be considered if respiratory disease severity is not prohibitive, and long-term tracheostomy should be discussed as a possibility." — James Cnota (host_summary) [Ep 2 · 24:20](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1460)
- "Because trisomy 13/18 patients are prone to early pulmonary hypertension, early cardiac surgery is reasonable in mild to moderate complex disease to prevent irreversible pulmonary vascular changes." — James Cnota (host_summary) [Ep 2 · 25:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1500)
- "Ductal stenting has evolved in the last 10 years to be used widely for various forms of congenital heart disease with reduced pulmonary blood flow, including tetralogy of Fallot in trisomy patients." — James Cnota (clinical) [Ep 2 · 26:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1560)
- "Pulmonary flow restrictors (vascular plugs with small holes) can be placed percutaneously in the cath lab to reduce left-to-right shunt symptoms as a palliative step, replacing historical use of pulmonary bands." — James Cnota (clinical) [Ep 2 · 26:30](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1590)
- "Since 2019, Cincinnati Children's has performed 17 index cardiopulmonary bypass procedures, mostly for simple shunts but including 6 cases of tetralogy and double outlet right ventricle, with 94% operative survival." — James Cnota (epidemiological) [Ep 2 · 27:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1620)
- "Cincinnati Children's typically performs formal airway evaluation before cardiac surgery and screens for hepatoblastoma through referring centers." — James Cnota (clinical) [Ep 2 · 26:40](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1600)
- "Improved outcomes are attributed to both careful case selection and institutional learning about postoperative intensive care for trisomy 13/18 patients." — James Cnota (opinion) [Ep 2 · 28:00](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1680)
- "Assessment of pulmonary vascular bed status and airway status are critically important for case selection beyond just the cardiac disease." — James Cnota (clinical) [Ep 2 · 28:30](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1710)
- "When the heart is enlarged, lungs are flooded, and BNP is high, cardiac catheterization is not needed before considering VSD closure." — James Cnota (clinical) [Ep 2 · 29:30](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1770)
- "When a VSD is large and non-restrictive, there will never be a pressure gradient, so the RV will always be at systemic pressure." — James Cnota (clinical) [Ep 2 · 29:55](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1795)
- "Cardiac catheterization is performed when the clinical puzzle doesn't fit together (small LV, baby not breathing fast) to assess pulmonary hypertension before surgery." — James Cnota (clinical) [Ep 2 · 30:15](https://library.globalcastmd.com/watch/james-cnota-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9499?t=1815)
- "Trisomy 13 and 18 were first described in back-to-back case reports in The Lancet in 1960." — Daniel Swarr (clinical) [Ep 1 · 2:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=120)
- "In Weber et al.'s 1967 case series, about 28% of infants with trisomy 13/18 had died by 4 weeks of age and 87% had died by their first birthday." — Daniel Swarr (epidemiological) [Ep 1 · 2:30](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=150)
- "Literature from the 1980s and 1990s showed median survival for trisomy 18 ranging from 2.5 days to 2 weeks depending on the study." — Daniel Swarr (epidemiological) [Ep 1 · 3:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=180)
- "The conventional or historical approach to management of trisomy 13/18 was to offer only comfort care and withhold technological support such as mechanical ventilation or surgery." — Daniel Swarr (clinical) [Ep 1 · 4:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=240)
- "A 2008 survey showed the conventional approach was a very commonly held view among neonatologists, but newer surveys suggest perspectives are changing." — Daniel Swarr (epidemiological) [Ep 1 · 4:40](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=280)
- "Medical interventions offered to infants with trisomy 13/18 have changed dramatically over the past 5-10 years in terms of delivery room resuscitation and NICU care including surgical care." — Daniel Swarr (clinical) [Ep 1 · 5:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=300)
- "Quantitative futility means the medical intervention doesn't work at all; for example, mechanical ventilation will treat apnea, so calling it futile wouldn't apply in that situation." — Daniel Swarr (clinical) [Ep 1 · 6:40](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=400)
- "The Ontario study (Nelson et al., JAMA 2016) was a retrospective cohort study spanning 1991-2012 with 174 trisomy 13 and 454 trisomy 18 infants, and the authors did not see a change in survival over time." — Daniel Swarr (epidemiological) [Ep 1 · 8:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=480)
- "In the Ontario study, the incidence was 6 per 100,000 live births for trisomy 13 and 8.8 per 100,000 live births for trisomy 18." — Daniel Swarr (epidemiological) [Ep 1 · 9:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=540)
- "Ontario survival curves show a steep drop-off in survival in the first month and especially the first week of life, but after that survival plateaus significantly, especially after 6 months of age." — Daniel Swarr (epidemiological) [Ep 1 · 9:40](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=580)
- "In the Ontario study, for trisomy 13, of infants alive at 30 days, 1-year survival was 47%, and of those alive at 6 months, 10-year survival was approximately 50%." — Daniel Swarr (epidemiological) [Ep 1 · 10:40](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=640)
- "In the Ontario study, for trisomy 18, of infants alive at 30 days, 1-year survival was 36%, and of those alive at 6 months, 10-year survival was 60%." — Daniel Swarr (epidemiological) [Ep 1 · 11:20](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=680)
- "In the Ontario study, 41 of 174 trisomy 13 infants received surgical procedures including major cardiac surgical procedures, GI procedures including G-tube, and tracheostomy placement." — Daniel Swarr (epidemiological) [Ep 1 · 13:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=780)
- "There is selection bias in which infants receive surgeries; many receiving surgeries are those who have already survived the first month or several months of life when mortality is highest." — Daniel Swarr (clinical) [Ep 1 · 13:40](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=820)
- "The Cincinnati neonatology department covers all level 1 and level 2 nurseries in addition to NICUs, allowing capture of all live births in the region." — Daniel Swarr (clinical) [Ep 1 · 15:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=900)
- "The Cincinnati study spanned January 1, 2012 to December 31, 2018 and included 125 fetuses or infants with trisomy 13 or 18." — Daniel Swarr (epidemiological) [Ep 1 · 16:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=960)
- "The Cincinnati live birth rate was 1 per 10,000 for trisomy 13 and 1.86 per 10,000 for trisomy 18, roughly double the rates in the Ontario study." — Daniel Swarr (epidemiological) [Ep 1 · 16:30](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=990)
- "In the Cincinnati study, spontaneous loss rates were about 6.5% for pregnancies prior to 20 weeks gestation and around 19% for pregnancies after 20 weeks gestation, totaling about 25%." — Daniel Swarr (epidemiological) [Ep 1 · 17:10](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1030)
- "In the Cincinnati study, the elective termination rate was around 17% and 58% of pregnancies ended in live birth." — Daniel Swarr (epidemiological) [Ep 1 · 17:45](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1065)
- "In the Cincinnati cohort, cesarean section rate was 49%, preterm labor was 14%, delivery for maternal indications was 16.7%, and delivery for fetal well-being was 16.7%." — Daniel Swarr (epidemiological) [Ep 1 · 18:05](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1085)
- "In the Cincinnati study, 81% of diagnoses were made prenatally, most confirmed by amniocentesis, though a few by CVS." — Daniel Swarr (epidemiological) [Ep 1 · 18:40](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1120)
- "Cell-free fetal DNA was performed in 50 Cincinnati pregnancies and reported as high risk in 92%, but 4 of 50 had low-risk results despite confirmed trisomy 13 or 18 diagnosis (all false negatives were trisomy 18)." — Daniel Swarr (epidemiological) [Ep 1 · 19:10](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1150)
- "In the Cincinnati cohort, 24 cases had postnatal diagnosis; 12 had high-risk non-invasive testing prior to delivery, 2 had low-risk cell-free fetal DNA, and the remainder had declined or failed testing." — Daniel Swarr (epidemiological) [Ep 1 · 20:00](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1200)
- "In the Cincinnati study, median survival for trisomy 13 was 7 days with one child alive at 637 days at data collection." — Daniel Swarr (epidemiological) [Ep 1 · 21:10](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1270)
- "In the Cincinnati study, median survival for trisomy 18 was approximately one month with one child still alive at about 7.5 years at data collection." — Daniel Swarr (epidemiological) [Ep 1 · 21:35](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1295)
- "In the Cincinnati data, of 27 infants alive at one month, approximately 50% were alive at 1 year of age." — Daniel Swarr (epidemiological) [Ep 1 · 22:10](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1330)
- "Factors associated with mortality in the Cincinnati study were trisomy 13 (vs 18), initial goals of care, extremely low birth weight, and extreme prematurity; no obvious major differences were found for common congenital anomalies." — Daniel Swarr (epidemiological) [Ep 1 · 22:30](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1350)
- "In the Cincinnati cohort, about 25% of children across both trisomy groups received mechanical ventilation (slightly more in trisomy 13, slightly fewer in trisomy 18)." — Daniel Swarr (epidemiological) [Ep 1 · 21:50](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1310)
- "In the Cincinnati study, about 25% received surgical intervention (slightly more for trisomy 18, slightly less for trisomy 13), with some infants receiving multiple procedures." — Daniel Swarr (epidemiological) [Ep 1 · 22:15](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1335)
- "In the Cincinnati cohort, the breakdown of initial goals of care was approximately 50% choosing full intensive care as indicated, 40% comfort care, and 10% non-invasive support (high-flow nasal cannula, standard nasal cannula, or NG feeds without mechanical ventilation or surgery)." — Daniel Swarr (epidemiological) [Ep 1 · 21:40](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1300)
- "Fetuses and infants with trisomy 13 and 18 are at relatively high risk of intrauterine fetal demise or spontaneous loss (around 25% total in the Cincinnati study)." — Daniel Swarr (clinical) [Ep 1 · 22:45](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1365)
- "A growing body of evidence suggests that both medical and surgical interventions can increase survival rates in trisomy 13/18, though these infants have higher rates of morbidity and mortality associated with procedures." — Daniel Swarr (clinical) [Ep 1 · 23:10](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1390)
- "Long-term survival with trisomy 13 or 18 is possible, and even with a comfort care approach, long-term survival could be a potential outcome." — Daniel Swarr (clinical) [Ep 1 · 23:45](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1425)
- "Counseling at all stages of care should be tailored to each family and child, should be multidisciplinary and data-driven, and should adapt to multiple risk factors such as gestational age, birth weight, and complexity of surgical anomalies." — Daniel Swarr (guideline) [Ep 1 · 24:10](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1450)
- "It is difficult to tease apart from retrospective studies whether families choosing more intensive care do so because their baby is term with fewer anomalies, or whether the interventions actually extend life." — Daniel Swarr (opinion) [Ep 1 · 24:30](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1470)
- "Prenatal diagnosis correlates with shorter survival compared to postnatal diagnosis in many retrospective studies of trisomy 13/18." (epidemiological) [Ep 1 · 25:29](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1529)
- "The difference in survival between prenatal and postnatal diagnosis is likely related to the time families have to prepare; postnatal diagnosis families are dealing with shock and upset during the NICU period when medical decisions are being made." — Daniel Swarr (opinion) [Ep 1 · 25:45](https://library.globalcastmd.com/watch/dan-swarr-md-2024-fetal-care-center-navigating-perinatal-care-for-trisomy-13-18-9498?t=1545)

## Changelog
- Sep 24: 7 items added automatically

---
Educational content from recorded physician discussions — not medical advice. Cite the canonical URL or the ?t= deep link. Policy: https://library.globalcastmd.com/ai