Daniel Swarr

80 statements · 2 topics · summaries given as host listed separately

Featured statements

▶ Ep 1 · 24:10
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.
guideline · Trisomy 13
▶ Ep 1 · 22:30
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.
epidemiological · Trisomy 13
▶ Ep 1 · 19:10
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).
epidemiological · Trisomy 18
▶ Ep 1 · 9:40
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.
epidemiological · Trisomy 18

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Daniel's statements about Trisomy 13 40 statements

Open the Trisomy 13 collection →

Dan Swarr, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18

▶ Ep 1 · 2:00
clinical Trisomy 13 and 18 were first described in back-to-back case reports in The Lancet in 1960. ↗
▶ Ep 1 · 2:30
epidemiological 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. ↗
▶ Ep 1 · 2:40
quote about 28% of the infants had died by 4 weeks of age and 87% had died by their first birthday ↗
▶ Ep 1 · 3:00
epidemiological Literature from the 1980s and 1990s showed median survival for trisomy 18 ranging from 2.5 days to 2 weeks depending on the study. ↗
▶ Ep 1 · 4:00
clinical 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. ↗
▶ Ep 1 · 4:10
quote conventional approach and Maybe not, that's kind of no longer the best term as, as we've changed so much in how we approach these inferences ↗
▶ Ep 1 · 4:15
quote conventional or at least historical approach to management of these inferences typically to really only offer comfort care in the withholding of technological support such as mechanical ventilation or surgery ↗
▶ Ep 1 · 4:40
epidemiological A 2008 survey showed the conventional approach was a very commonly held view among neonatologists, but newer surveys suggest perspectives are changing. ↗
▶ Ep 1 · 5:00
clinical 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. ↗
▶ Ep 1 · 6:00
quote the diagnosis is perceived as quote unquote lethal or resulting in a very poor, very poor quality of life ↗
▶ Ep 1 · 6:40
clinical 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. ↗
▶ Ep 1 · 8:00
epidemiological 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. ↗
▶ Ep 1 · 9:00
epidemiological 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. ↗
▶ Ep 1 · 9:40
epidemiological 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. ↗
▶ Ep 1 · 10:40
epidemiological 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%. ↗
▶ Ep 1 · 11:20
epidemiological 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%. ↗
▶ Ep 1 · 13:00
epidemiological 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. ↗
▶ Ep 1 · 13:40
clinical 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. ↗
▶ Ep 1 · 15:00
clinical 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. ↗
▶ Ep 1 · 16:00
epidemiological The Cincinnati study spanned January 1, 2012 to December 31, 2018 and included 125 fetuses or infants with trisomy 13 or 18. ↗
▶ Ep 1 · 16:30
epidemiological 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. ↗
▶ Ep 1 · 17:10
epidemiological 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%. ↗
▶ Ep 1 · 17:45
epidemiological In the Cincinnati study, the elective termination rate was around 17% and 58% of pregnancies ended in live birth. ↗
▶ Ep 1 · 18:05
epidemiological 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%. ↗
▶ Ep 1 · 18:40
epidemiological In the Cincinnati study, 81% of diagnoses were made prenatally, most confirmed by amniocentesis, though a few by CVS. ↗
▶ Ep 1 · 19:10
epidemiological 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). ↗
▶ Ep 1 · 20:00
epidemiological 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. ↗
▶ Ep 1 · 21:10
epidemiological In the Cincinnati study, median survival for trisomy 13 was 7 days with one child alive at 637 days at data collection. ↗
▶ Ep 1 · 21:35
epidemiological 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. ↗
▶ Ep 1 · 21:40
epidemiological 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). ↗
▶ Ep 1 · 21:50
epidemiological 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). ↗
▶ Ep 1 · 22:10
epidemiological In the Cincinnati data, of 27 infants alive at one month, approximately 50% were alive at 1 year of age. ↗
▶ Ep 1 · 22:15
epidemiological 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. ↗
▶ Ep 1 · 22:30
epidemiological 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. ↗
▶ Ep 1 · 22:45
clinical 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). ↗
▶ Ep 1 · 23:10
clinical 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. ↗
▶ Ep 1 · 23:45
clinical 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. ↗
▶ Ep 1 · 24:10
guideline 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. ↗
▶ Ep 1 · 24:30
opinion 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. ↗
▶ Ep 1 · 25:45
opinion 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's statements about Trisomy 18 40 statements

Open the Trisomy 18 collection →

Dan Swarr, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18

▶ Ep 1 · 2:00
clinical Trisomy 13 and 18 were first described in back-to-back case reports in The Lancet in 1960. ↗
▶ Ep 1 · 2:30
epidemiological 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. ↗
▶ Ep 1 · 2:40
quote about 28% of the infants had died by 4 weeks of age and 87% had died by their first birthday ↗
▶ Ep 1 · 3:00
epidemiological Literature from the 1980s and 1990s showed median survival for trisomy 18 ranging from 2.5 days to 2 weeks depending on the study. ↗
▶ Ep 1 · 4:00
clinical 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. ↗
▶ Ep 1 · 4:10
quote conventional approach and Maybe not, that's kind of no longer the best term as, as we've changed so much in how we approach these inferences ↗
▶ Ep 1 · 4:15
quote conventional or at least historical approach to management of these inferences typically to really only offer comfort care in the withholding of technological support such as mechanical ventilation or surgery ↗
▶ Ep 1 · 4:40
epidemiological A 2008 survey showed the conventional approach was a very commonly held view among neonatologists, but newer surveys suggest perspectives are changing. ↗
▶ Ep 1 · 5:00
clinical 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. ↗
▶ Ep 1 · 6:00
quote the diagnosis is perceived as quote unquote lethal or resulting in a very poor, very poor quality of life ↗
▶ Ep 1 · 6:40
clinical 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. ↗
▶ Ep 1 · 8:00
epidemiological 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. ↗
▶ Ep 1 · 9:00
epidemiological 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. ↗
▶ Ep 1 · 9:40
epidemiological 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. ↗
▶ Ep 1 · 10:40
epidemiological 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%. ↗
▶ Ep 1 · 11:20
epidemiological 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%. ↗
▶ Ep 1 · 13:00
epidemiological 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. ↗
▶ Ep 1 · 13:40
clinical 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. ↗
▶ Ep 1 · 15:00
clinical 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. ↗
▶ Ep 1 · 16:00
epidemiological The Cincinnati study spanned January 1, 2012 to December 31, 2018 and included 125 fetuses or infants with trisomy 13 or 18. ↗
▶ Ep 1 · 16:30
epidemiological 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. ↗
▶ Ep 1 · 17:10
epidemiological 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%. ↗
▶ Ep 1 · 17:45
epidemiological In the Cincinnati study, the elective termination rate was around 17% and 58% of pregnancies ended in live birth. ↗
▶ Ep 1 · 18:05
epidemiological 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%. ↗
▶ Ep 1 · 18:40
epidemiological In the Cincinnati study, 81% of diagnoses were made prenatally, most confirmed by amniocentesis, though a few by CVS. ↗
▶ Ep 1 · 19:10
epidemiological 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). ↗
▶ Ep 1 · 20:00
epidemiological 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. ↗
▶ Ep 1 · 21:10
epidemiological In the Cincinnati study, median survival for trisomy 13 was 7 days with one child alive at 637 days at data collection. ↗
▶ Ep 1 · 21:35
epidemiological 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. ↗
▶ Ep 1 · 21:40
epidemiological 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). ↗
▶ Ep 1 · 21:50
epidemiological 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). ↗
▶ Ep 1 · 22:10
epidemiological In the Cincinnati data, of 27 infants alive at one month, approximately 50% were alive at 1 year of age. ↗
▶ Ep 1 · 22:15
epidemiological 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. ↗
▶ Ep 1 · 22:30
epidemiological 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. ↗
▶ Ep 1 · 22:45
clinical 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). ↗
▶ Ep 1 · 23:10
clinical 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. ↗
▶ Ep 1 · 23:45
clinical 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. ↗
▶ Ep 1 · 24:10
guideline 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. ↗
▶ Ep 1 · 24:30
opinion 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. ↗
▶ Ep 1 · 25:45
opinion 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. ↗

Summaries Daniel gave as host · 2 summaries

Recaps of other experts' statements, not Daniel's own clinical position.

Summaries Daniel gave as host · Trisomy 13 1 summary

Open the Trisomy 13 collection →

Dan Swarr, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18

▶ Ep 1 · 24:50
host summary Daniel Swarr summarizing the discussion: a plea for truth, transparency, and recognition of our prejudices regarding the decisions we make when caring for these children ↗
Summaries Daniel gave as host · Trisomy 18 1 summary

Open the Trisomy 18 collection →

Dan Swarr, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18

▶ Ep 1 · 24:50
host summary Daniel Swarr summarizing the discussion: a plea for truth, transparency, and recognition of our prejudices regarding the decisions we make when caring for these children ↗