John Carey

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

Featured statements

▶ Ep 7 · 11:40
The counseling process should include presentation of accurate survival figures, avoidance of language that assumes outcome, communicational developmental outcome that does not predispose perception of quality of life, and respect for family's choice
quote · Trisomy 13

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John's statements about Trisomy 13 8 statements

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John Carey, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18

▶ Ep 7 · 1:21
quote This has been a fabulous conference, I have to say, for someone who has been struggling, pondering, celebrating these issues for more than 40 years, uh, it is heartwarming to see so many presentations all pulled together at one time. ↗
▶ Ep 7 · 10:40
epidemiological 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. ↗
▶ Ep 7 · 11:40
quote The counseling process should include presentation of accurate survival figures, avoidance of language that assumes outcome, communicational developmental outcome that does not predispose perception of quality of life, and respect for family's choice ↗
▶ Ep 7 · 24:50
epidemiological 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. ↗
▶ Ep 7 · 26:20
epidemiological 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. ↗
▶ Ep 7 · 27:10
clinical In a study polling families with trisomy 13 from a Facebook database, 3 individuals walked unassisted, usually after age 6. ↗
▶ Ep 7 · 28:56
clinical 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. ↗
▶ Ep 7 · 30:00
epidemiological 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's statements about Trisomy 18 8 statements

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John Carey, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18

▶ Ep 7 · 1:21
quote This has been a fabulous conference, I have to say, for someone who has been struggling, pondering, celebrating these issues for more than 40 years, uh, it is heartwarming to see so many presentations all pulled together at one time. ↗
▶ Ep 7 · 10:40
epidemiological 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. ↗
▶ Ep 7 · 11:40
quote The counseling process should include presentation of accurate survival figures, avoidance of language that assumes outcome, communicational developmental outcome that does not predispose perception of quality of life, and respect for family's choice ↗
▶ Ep 7 · 24:50
epidemiological 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. ↗
▶ Ep 7 · 26:20
epidemiological 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. ↗
▶ Ep 7 · 27:10
clinical In a study polling families with trisomy 13 from a Facebook database, 3 individuals walked unassisted, usually after age 6. ↗
▶ Ep 7 · 28:56
clinical 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. ↗
▶ Ep 7 · 30:00
epidemiological 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. ↗

Summaries John gave as host · 28 summaries

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

Summaries John gave as host · Trisomy 13 14 summaries

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John Carey, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18

▶ Ep 7 · 5:20
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 6:20
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 9:40
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 15:00
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 18:20
host summary John Carey summarizing a resource: 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). ↗
▶ Ep 7 · 19:20
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 20:00
host summary John Carey summarizing a resource: The Journal of Pediatrics study by Cortezo, Leandra, and Dan Swar (population retrospective cohort) demonstrated that intervention does increase survival in trisomy 13/18. ↗
▶ Ep 7 · 21:40
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 22:40
host summary John Carey summarizing a resource: Based on our analysis of recent data, we recommend that decisions should not be based solely on the presence of trisomy, but instead should be made on a case by case basis, considering both the severity of the baby's heart disease as well as the presence of other anomalies. ↗
▶ Ep 7 · 22:40
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 24:10
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 24:50
host summary John Carey summarizing a resource: her daughter was born alive. This was such an accomplishment after all the negative possibilities we have faced during her pregnancy. ↗
▶ Ep 7 · 25:30
host summary John Carey summarizing a resource: 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). ↗
▶ Ep 7 · 27:50
host summary John Carey summarizing a resource: 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. ↗
Summaries John gave as host · Trisomy 18 14 summaries

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John Carey, MD - 2024 Fetal Care Center Navigating Perinatal Care for Trisomy 13 & 18

▶ Ep 7 · 5:20
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 6:20
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 9:40
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 15:00
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 18:20
host summary John Carey summarizing a resource: 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). ↗
▶ Ep 7 · 19:20
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 20:00
host summary John Carey summarizing a resource: The Journal of Pediatrics study by Cortezo, Leandra, and Dan Swar (population retrospective cohort) demonstrated that intervention does increase survival in trisomy 13/18. ↗
▶ Ep 7 · 21:40
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 22:40
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 22:40
host summary John Carey summarizing a resource: Based on our analysis of recent data, we recommend that decisions should not be based solely on the presence of trisomy, but instead should be made on a case by case basis, considering both the severity of the baby's heart disease as well as the presence of other anomalies. ↗
▶ Ep 7 · 24:10
host summary John Carey summarizing a resource: 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. ↗
▶ Ep 7 · 24:50
host summary John Carey summarizing a resource: her daughter was born alive. This was such an accomplishment after all the negative possibilities we have faced during her pregnancy. ↗
▶ Ep 7 · 25:30
host summary John Carey summarizing a resource: 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). ↗
▶ Ep 7 · 27:50
host summary John Carey summarizing a resource: 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. ↗