Research and Resource Articles

Click on a topic below to view research and other resource articles

Abortion

Grief After Termination of Pregnancy Due to Fetal Malformation (2004)

Adjustment to termination of pregnancy for fetal anomaly: a longitudinal study in women at 4, 8, and 16 months (2009)

Psychological impact on women after second and third trimester termination of pregnancy due to fetal anomalies versus women after preterm birth–a 14-month follow up study (2009)

Health care professionals’ attitudes about pregnancy termination for different fetal anomalies (2012)

Prenatal diagnosis of hypoplastic left heart syndrome: impact of counseling patterns on parental perceptions and decisions regarding termination of pregnancy (2012)

Prenatal Testing and Abortion: The Impact on Parents and Families (2016)

Abortion’s Impact on Prematurity: Closing the Knowledge Gap (2017)

Psychological Impact of Abortion due to Fetal Anomaly: A Review of Published Research (2017)

Is Abortion Justified After an Adverse Prenatal Diagnosis? (2018)

Aborting the Wanted Child (2020)

Anencephaly

Fatally flawed? A review and ethical analysis of lethal congenital malformations (2012)

Prolonged unassisted survival in an infant with anencephaly (2016)

Carrying to Term

Perinatal Hospice: Family-Centered Care of the Fetus with a Lethal Condition (2006)

Pregnancy continuation and organizational religious activity following prenatal diagnosis of a lethal fetal defect are associated with improved psychological outcome (2015)

Acknowledged Dependence and the Virtues of Perinatal Hospice – PMC (nih.gov) (2016)

Have no regrets: Parents’ Experiences and Developmental Tasks in Pregnancy with a Lethal Fetal Diagnosis (2016)

“I Would Do It All Over Again”: Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis (2018)

Catholic Ethics

Prenatal Testing and Denial of Care (2018)

Ethical Care of Infants with a Life-Limiting Prenatal Diagnoses Based on Catholic Teaching (2019)

Newborn Care and “Lethal” Prenatal Diagnoses (2020)

Congenital Heart Disease (CHD)

Maternal Psychological Stress after Prenatal Diagnosis of Congenital Heart Disease (2012)

Prenatal Diagnosis of Hypoplastic Left Heart Syndrome: Impact of Counseling Patterns on Parental Perceptions and Decisions Regarding Termination of Pregnancy (2012)

Potential benefits and consequences of public reporting of pediatric cardiac surgery outcomes (2016)

Down Syndrome (Trisomy 21)

The Portrayal of Down Syndrome in Prenatal Screening Information Pamphlets (2012)

Prenatal Risk Assessment and Diagnosis of Down Syndrome: Strategies for Communicating Well with Patients (2016)

Edward’s Syndrome (Trisomy 18)

Fatally flawed? A review and ethical analysis of lethal congenital malformations (2012)

The Experience of Families with Children with Trisomy 13 and 18 in Social Networks (2012)

Our Children Are Not a Diagnosis: The Experience of Parents who Continue Their Pregnancy After a Prenatal Diagnosis of Trisomy 13 or 18 (2013)

Trisomy 18 and Complex Heart Disease: Seeking the Threshold Benefit (2013)

Mortality and Morbidity of VLBW Infants with Trisomy 13 or Trisomy 18 (2014)

Perinatal Management of Trisomy 18: A Survey of Obstetricians in Australia, New Zealand and the UK (2014)

Survival of Children with Trisomy 13 and Trisomy 18: A Multi-State Population-Based Study (2016)

Parental Hopes, Interventions, and Survival of Neonates with Trisomy 13 and Trisomy 18 (2016)

Long-Term Outcomes of Children with Trisomy 13 and 18 After Congenital Heart Disease Interventions (2017)

Obstetricians’ Views on the Ethics of Cardiac Surgery for Newborns with Common Aneuploidies (2018)

Mortality and Resource Use Following Cardiac Interventions in Children with Trisomy 13 and Trisomy 18 and Congenital Heart Disease (2018)

Trisomy 18 Syndrome: An Ethical Dilemma in the Neonatal Intensive Care Unit (2018)

Lethal Language

Fatally Flawed? A Review and Ethical Analysis of Lethal Congenital Malformations (2012)

Ethical Language and Decision-Making for Prenatally Diagnosed Lethal Malformations (2014)

The Term Incompatible with Life is Incompatible with the Best Care (2014)

Medical Perspectives

Survey of Physicians’ Approach to Severe Fetal Anomalies (2011)

Health care professionals’ attitudes about pregnancy termination for different fetal anomalies (2012)

Perinatal Management of Trisomy 18: A Survey of Obstetricians in Australia, New Zealand and the UK (2014)

In What Circumstances will a Neonatologist Decide a Patient is Not a Resuscitation Candidate? (2015)

Obstetricians’ Views on the Ethics of Cardiac Surgery for Newborns with Common Aneuploidies (2018)

Perinatal Palliative Care: A Qualitative Study Evaluating the Perspectives of Pregnancy Counselors (2019)

NIPT/Cell-Free DNA Testing

NIPT/Cell Free DNA Screening Predictive Value Online Calculator

No US commercial NIPS Labs Fully Follow ACMG’s 2016 Guidelines (2019)

Outcomes in Pregnancies with a Confined Placental Mosaicism and Implications for Prenatal Screening Using Cell-Free DNA (2019)

Abnormal Prenatal Cell-Free DNA Screening Results (2020)

Osteogenesis Imperfecta (OI)

Fatally flawed? A review and ethical analysis of lethal congenital malformations (2012)

What If the Prenatal Diagnosis of a Lethal Anomaly Turns Out to Be Wrong? (2016)

Patau Syndrome (Trisomy 13)

Better Prognosis in Newborns with Trisomy 13 Who Received Intensive Treatments: A Retrospective Study of 16 Patients (2012)

Fatally Flawed? A Review and Ethical Analysis of Lethal Congenital Malformations (2012)

The Experience of Families with Children with Trisomy 13 and 18 in Social Networks (2012)

Our Children Are Not a Diagnosis: The Experience of Parents who Continue Their Pregnancy After a Prenatal Diagnosis of Trisomy 13 or 18 (2013)

Mortality and Morbidity of VLBW Infants with Trisomy 13 or Trisomy 18 (2014)

Parental Hopes, Interventions, and Survival of Neonates with Trisomy 13 and Trisomy 18 (2016)

Survival of Children with Trisomy 13 and Trisomy 18: A Multi-State Population-Based Study (2016)

Long-Term Outcomes of Children with Trisomy 13 and 18 After Congenital Heart Disease Interventions (2017)

Mortality and Resource Use Following Cardiac Interventions in Children with Trisomy 13 and Trisomy 18 and Congenital Heart Disease (2018)

Obstetricians’ Views on the Ethics of Cardiac Surgery for Newborns with Common Aneuploidies (2018)

Trisomy 18 Syndrome: An Ethical Dilemma in the Neonatal Intensive Care Unit (2018)

Prenatal Testing

NIPT/Cell Free DNA Screening Predictive Value Online Calculator

Risk and Uncertainty: Shifting Decision Making for Aneuploidy Screening to the First Trimester of Pregnancy (2011)

Systematic Review of the Literature: Parental Outcomes After Diagnosis of Fetal Anomaly (2011)

Prenatal Genetic Testing: When is it “Toxic Knowledge”? (2012)

The Portrayal of Down Syndrome in Prenatal Screening Information Pamphlets (2012)

Early-stage Embryos with Abnormalities May Still Develop into Healthy Babies (2016)

Prenatal Risk Assessment and Diagnosis of Down Syndrome: Strategies for Communicating Well with Patients (2016)

Supporting Women’s Autonomy in Prenatal Testing (2017)

The Psychological Well‐being of Pregnant Women Undergoing Prenatal Testing and Screening: A Narrative Literature Review (2019)

High Risk-What’s next? A Survey Study on Decisional Conflict, Regret, and Satisfaction Among High Risk Pregnant Women

Making Choices about Further Prenatal Testing for Fetal Aneuploidy (2019)

The Prevalence and the Adding Value of Fetal MRI Imaging in Midline Cerebral Anomalies (2020)

Trauma and Prenatal Diagnosis

Antenatal Diagnosis of Congenital  Anomaly: A Really Traumatic Experience? (2011)

Maternal Psychological Stress after Prenatal Diagnosis of Congenital Heart Disease (2012)

Mental Health Nursing and the Prenatal Diagnosis of a Congenital Anomaly; A Narrative Experience (2020)