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The Changing Face of Life-Limiting Prenatal Diagnoses: Part 2
Clinical, Pastoral, and Ethical Considerations


register

Save the date! Saturday, October 25 

8:30am – 4:30pm

Location:
Geddes Hall Auditorium, University of Notre Dame

Cost:
Students free
Physicians ($50)
All other participants ($30)
If the registration fee is a hardship for you, please contact Lisa Everett at [email protected].

Registration deadline is October 20.

Video recordings from the March conference can be found here.

Read Teresa Donovan’s article, “An In-Depth Look at Prenatal Testing and Implications for Parental Decision-Making,” about the March conference here.

Sponsors

Conference Presentations

Prognostic Implications of Prenatal Brain Imaging

Michael R. Egnor, MD

Parents receiving a prenatal diagnosis associated with the brain or CNS are often provided with worst case scenario prognoses.  In many instances, these prognoses are provided by doctors who do not treat children with neurological issues.  Dr. Egnor will discuss the limitations of prenatal diagnosis of brain disorders to include in some instances of potential misdiagnoses of conditions. He will point out that radiologists and obstetricians often provide counseling about prenatal diagnoses of brain disorders, and that this is inappropriate because these physicians have no training or experience with medical care of these children after birth. Dr. Egnor will make the case that prenatal counseling should be provided only by physicians who have extensive training and personal experience with the postnatal care of disabled children. This would include pediatric neurosurgeons, pediatric neurologists and pediatricians who specialize in the care of disabled children.

The effect of airway interventions for children with Trisomy 18

Glenn E. Green, MD

Trisomy 18 is a genetic syndrome that is usually presented to parents as lethal and incompatible with life.  For decades, the presumption of lethality denied these infants standard of care airway evaluations made available to other infants experiencing dyspnea in the NICU setting.  Dr. Green will discuss his ground-breaking work at the University of MI (Ann Arbor) in the treatment of airway obstruction for these babies. The impact of outcomes will be reviewed, to include the development of a specialized University of Michigan pediatric clinic for children living with T13 and T18.

Carrying to Term Following a Prenatal Diagnosis: Changing Perspectives, Informing Parents 

Tracy Winsor

During our first day-long program at Notre Dame in the spring, an interesting discussion followed a question regarding the medical community’s assertion that abortion may be the only ethical option to offer to parents following a prenatal diagnosis. Winsor will explore how our pro-life advocacy fails to use relevant medical research to assert what true ethical care means for this population of parents.  She will also discuss in turn what advocacy for abortion vulnerable parents experiencing a prenatal diagnosis should look like.  In addition, attendees will be offered the opportunity to complete a Be Not Afraid online training specific to outreach for parents who are undecided about carrying to term, which is both trauma-responsive and focused on informed consent.

Is Legislation the Answer to Improving Life-Affirming Outcomes for Parents Experiencing a Prenatal Diagnosis?

Marty McCaffrey, MD, CAPT USN (Ret), PQCNC Director

Significant efforts have been made over the last ten to fifteen years to legislate better care for parents experiencing a prenatal diagnosis.  Some focus on improving the quality of information provided to parents at diagnosis whereas others focus on connecting parents to relevant medical services.  Dr. McCaffrey will review his first-hand experience of the challenges associated with the passage of such legislation as well as recent research indicating the impact of legislative efforts around Down syndrome on parent experiences.  Discussion of the ethical issues associated with abortion bans for certain diagnoses as well as the undermining nature of most heartbeat bills will be addressed. 

Luke’s Story: The Complicated Story of a Tiny, Beloved Son

Maureen and Brendan O’Connor

Brendan and Maureen O’Connor will share the experience of their son Luke’s prenatal diagnosis, as well as advocating for his life and care. They will also explore the grief and trauma that resulted from this time in their lives. More specifically, the O’Connors will discuss what factors contributed to the trauma but also what eased the burdens of prenatal diagnosis and navigating the care of a medically fragile child. Additionally, they will examine the complexities of navigating this very personal story as a medical professional.

About the Presenters

Michael R. Egnor, MD

Glenn E. Green, MD

Tracy Winsor, MPA, Be Not Afraid, Inc., Co-Founder and Training and Service Development Director

Marty McCaffrey, MD, CAPT USN (Ret), PQCNC Director

Maureen and Brendan O’Connor

Brendan and Maureen O’Connor are proud parents of three children and advocates for families facing prenatal diagnosis. Married for 15 years, they have faced infertility, prenatal diagnosis, as well as child loss, and have joyfully welcomed two children into their family through adoption. Following their son Luke’s prenatal diagnosis and receiving invaluable support from Be Not Afraid (BNA)—a case management support service for parents carrying to term following a prenatal diagnosis—the O’Connors became peer partners for the organization.

Brendan is a graduate of the University of Notre Dame and subsequently received his medical degree from Northeast Ohio Medical University. He served in the United States Navy for twelve years during which he spent time as a flight surgeon, completed residency training in Diagnostic Radiology, and served as the Medical Director of Radiology at Naval Medical Center Portsmouth in Virginia. In 2022, he completed a fellowship in Abdominal Imaging at the University of Pittsburgh Medical Center. Currently, he is an attending diagnostic radiologist at Butler Memorial Hospital in Butler, Pennsylvania. Maureen has assisted BNA in training other organizations in their unique and trauma-informed model of care and spoken about her family’s experience with prenatal diagnosis at the American Association of Pro-Life OBGYNs annual conference. After working as an editor and marketing professional for many years, she turned her attention to her children and family full-time in 2019. She holds a degree in English Literature from John Carroll University.

Dr. McCaffrey is a Professor of Pediatrics at the University of North Carolina in Chapel Hill in the Division of Neonatal-Perinatal Medicine. Prior to his UNC appointment Dr. McCaffrey was a Naval Medical Corps Officer directing neonatal care at the Naval Medical Center San Diego and leading the Navy Bureau of Medicine and Surgery Perinatal Advisory Board which oversaw QI in 23 Naval Hospitals worldwide. As faculty at UNC he has been the Director of the Perinatal Quality Collaborative of North Carolina (PQCNC) since 2006. PQCNC conducts QI initiatives statewide and is the NC DHHS perinatal quality improvement action arm.

Dr. McCaffrey has a strong interest in the care of infants and children, and the support of families with challenging prenatal diagnoses. He is well published on this topic and has offered medical counsel to hundreds of families over the last two decades as they seek alternatives to abortion in their pregnancies. He serves as a medical advisor to Be Not Afraid. Be Not Afraid is an organization committed to the formal training of local groups in providing case management to families seeking support in dealing with difficult prenatal diagnoses. He also serves as a medical expert for the Support Organization for Trisomy (SOFT).

Dr. McCaffrey is an expert on the association of surgical abortion with preterm birth. He is published on this topic and has led the passage of legislation in North Carolina requiring transparency for abortion services in the North Carolina Women’s Right to Know Bill as well the North Carolina Care for Women, Children, and Families Act which regulates abortion practices and requires full disclosure of the opportunities for life for infants with life limiting disorders.

Tracy Winsor BA, MPA, is the co-founder of Be Not Afraid (BNA) a case management support service for parents carrying to term following a prenatal diagnosis. BNA has welcomed over 300 infants since its founding fifteen years ago, and Tracy has overseen all aspects of program management.

Tracy has presented and written extensively on the topic of prenatal diagnosis to include providing presentations for the U.S. Bishops, the American Association of Prolife OBGYNs, the International Association of Catholic Nurses, the Philadelphia Trauma Training Conference, and the Catholic Social Workers National Association.

She also authored a chapter in the National Catholic Bioethics Center (NCBC) text, Catholic Health Care Ethics: A Manual for Practitioners, Third Edition, and in the summer of 2023 was featured in the National Catholic Bioethics Quarterly (Volume 3, Number 2) entitled “Recommended Revisions to the Ethical and Religious Directives.”  Her recent publications include a chapter on the pastoral care of parents experiencing a prenatal diagnosis in the 2025 book Indispensable: A Catholic Guide to Welcoming Persons with Developmental Disabilities published by Word on Fire.

Tracy’s implementation of an online training program to support the development of BNA-modeled services is part of a national prolife collaborative addressing prenatal diagnosis. The BNA model of care is unique in that it is parent-centered, research-based, and trauma-informed.

Tracy has been married to her husband, John, for thirty-nine years and is the mother of eight children, and six grandchildren. Her own experiences of pregnancy loss, acute neonatal intensive care, and medical disability inform the insight she brings to the topic of prenatal diagnosis.

 

Glenn E. Green, MD, is a Professor of Pediatric Otolaryngology at the University of Michigan who has been leading the transformation of medicine. He has developed surgical techniques and devices for complex airway reconstruction and is an inventor of several life-saving devices. In addition, he is the director of ongoing translational trials in both humans and animals. Dr. Green has won several innovation awards, including from Popular Mechanics (2013 Breakthrough Awards, New York City) and President Obama (2015 Honored Maker, the White House). His constructs are on display in the British Science Museum in London. Dr. Green’s work has received acclaim in the scientific and lay literature with publications in the New England Journal of Medicine, Science Translational Medicine, Nature Genetics, JAMA, Scientific American, and the New Yorker magazine.

Dr. Green serves on the Medical Advisory Board for the Support Organization for Trisomy (SOFT). For over 15 years, he has been actively working to improve the airway problems of children with Trisomy 13 and 18.

Michael R. Egnor, MD, is Professor of Neurosurgery and Pediatrics at the Renaissance School of Medicine at Stony Brook University. He specializes in pediatric neurosurgery. He received his medical degree from the College of Physicians and Surgeons at Columbia University and trained in neurosurgery at the University of Miami. He has been on faculty at Stony Brook since 1991. He is the neurosurgery residency director and has served as the director of pediatric neurosurgery and as vice-chairman of neurosurgery at Stony Brook Medicine. In addition to a full-time neurosurgical practice, he directs a research program on intracranial dynamics, cerebral blood flow and hydrocephalus and has lectured at scientific meetings worldwide and published in leading medical journals including the Journal of Neurosurgery and Cerebrospinal Fluid Research. He has a strong interest in Thomistic philosophy, philosophy of mind, neuroscience, evolution and intelligent design, and bioethics and has published and lectured extensively on these topics. Dr. Egnor was named one of New York’s best doctors by New York Magazine in 2005. Dr. Egnor is author of The Immortal Mind: a Neurosurgeon’s Case for the Existence of the Soul coauthored by Denyse O’Leary and published by Worthy Press.

Register here!

Registration deadline is October 20.

Doctors: $50
All other attendees: $30
Students: free

Lunch is included.

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Schedule

Contact:

Lisa Everett
[email protected]
574-234-0687

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