March 21, 2025 // Diocese

Experts Share How to Navigate Traumatic Prenatal Diagnosis

Ann Carey

A conference hosted by the University of Notre Dame on Saturday, March 15, attracted parents, medical personnel, and counselors to learn and discuss the latest research and the best practices for assisting families and their babies who have a prenatal diagnosis of a life-limiting condition.

Particular emphasis was placed on Trisomy, a genetic condition in which a person has an extra copy of a chromosome that can lead to various developmental and health issues. Permeating the conference was the principle of the profound dignity and value of all human life.

Mary O’Callaghan was among five expert speakers on the topic and the mother of a child with Down syndrome. She has a doctorate in psychology, is a fellow at Notre Dame’s de Nicola Center for Ethics and Culture, and serves on the governing board of the National Catholic Partnership on Disability.

She reported that, for decades, people with Down syndrome were considered unfit for society and were often institutionalized with no medical assistance. More recent improvements in medical care have resulted in better outcomes for Down children and fostered wider acceptance by society, she said.

Yet, abortion rates still are high for babies with a Down syndrome diagnosis – and likewise for babies with prenatal diagnoses of the lesser-known Trisomy 13 (Patau syndrome) and Trisomy 18 (Edward syndrome). O’Callaghan has testified in multiple state legislatures in favor of bans on disability-selective abortion.

Disability-selective abortions were termed “eugenic” by Dr. Donna Harrison, an obstetrician/gynecologist who is chair of the Alliance for Hippocratic Medicine and director of research for the American Association of Pro-life Obstetricians and Gynecologists. She spoke from both medical and personal experience.

Harrison said her first child had a prenatal diagnosis of a fatal heart defect and died shortly after birth. Her second child had the same diagnosis but was born healthy.

“A diagnosis is not a prognosis,” Harrison stressed, as all tests have false negatives and false positives. And even if a prenatal diagnosis turns out to be correct, nobody can predict how well a baby will do.

Prenatal screening tests are helpful, she said, if a problem is suspected, and tests are done to benefit the baby so that a problem might be surgically corrected in utero. Testing could also prepare parents to get accurate, up-to-date information on a condition and connect with other parents and support groups. But she said some testing is “for a eugenic purpose of weeding out the genetically imperfect.”

Dr. Robin Pierucci, a board member of the American College of Pediatricians and co-chair of its pro-life committee, said, “We really have to be intelligent about how we use this [prenatal diagnostic testing] and when do we even go looking.”

A prenatal diagnosis of some anomaly is often combined with “lethal language” that traumatizes parents who can be so upset that they lose their ability to advocate for their child, Pierucci said. In such circumstances, abortion is often suggested as the only solution, and a parent may give consent without being fully informed.

“A prenatal test doesn’t tell me how well this baby is going to do,” Pierucci said. “It doesn’t tell me about the spectrum of disease or how much or how little will be affected.” Rather, a diagnosis should be about how to help the baby to live well, she said.

In response to a question from a parent who had been pressured to abort because of a Trisomy 13 diagnosis, Pierucci advised parents who are traumatized by a diagnosis to simply “slow down.” There is no need to make immediate and rapid decisions, she said, for “your baby is not suffering when you are pregnant.”

Parents should give themselves time to recover from the trauma of the diagnosis, Pierucci advised, and to find out more about the condition, find people who can help, and find other parents who have children with the condition.

Indeed, numerous parents at the conference revealed immense support from other parents. Several parents brought children who had a Trisomy diagnosis, and some revealed they had been pressured to abort their babies or were told it would be cruel to bring a disabled baby into the world.

Each testified to the love their children experienced and the joy they brought to their families. The families found great support in the national Trisomy group, SOFT (Support Organization for Trisomy), whose annual conference will be held in Indianapolis from July 9-13. And some families reported that they helped the medical community to learn more about the happy, worthwhile life a Trisomy child could live, no matter how brief.

Two entities working toward that goal were represented at the conference. Be Not Afraid is a national case management support service for expectant parents with a prenatal diagnosis. Tracy Winsor, co-founder of the service, told the conference that “it’s a struggle to navigate a medical system that’s often more focused on shutting down your options than explaining your options.”

Parents often do not understand a diagnosis or prognosis for their baby, and in a state of trauma, they may be coerced into choosing an abortion, Winsor said. She urged parents to contact services or people who can help guide them through this traumatic time and assist them in giving their child life so the baby can be evaluated for possible medical help, just like any other person.

Miriam’s Blessing is a ministry of the Diocese of Fort Wayne-South Bend based on the Be Not Afraid model. Kellene Murdick, a nurse and mother, is the parent care coordinator for Miriam’s Blessing. She spoke about how she and other professionals like her are trained to understand the “trainwreck” parents go through with a troubling prenatal diagnosis and to walk with the family on their journey and help them avoid the “devastating regret and guilt that can follow the moral injury” of an abortion.

“I’m going to help you get to a point where you’re ready, on the day that this precious child is put in your arms, to parent this baby to the best of your ability,” Murdick said.

As Pierucci observed during the question-and-answer portion of the conference: Even if the child lives only an hour, “The parent will have had success in loving that child. The family can say ‘I parented my child as long as I had the privilege to do that,’ [which is] a privilege of a lifetime.”

The conference was co-sponsored by the Diocese of Fort Wayne-South Bend, Notre Dame’s de Nicola Center, and the Notre Dame Office of Life and Human Dignity, an entity of the McGrath Institute for Church Life.