November 7, 2025 // Diocese

Conference Highlights Help for Expectant Parents

Ann Carey

Babies who are diagnosed prenatally with a brain anomaly were the subject of a national conference at the University of Notre Dame on Saturday, October 25, that attracted medical personnel, counselors and families with disabled children.

The overall message of the conference was that all human life is precious and that a prenatal diagnosis of an anomaly does not necessarily mean the child will die or be severely handicapped. Also, there is support available to help families deal with traumatic diagnoses and to learn all the options to help their babies survive and thrive.

Three of the experts who spoke at the conference were doctors who have been on the cutting edge of developing new treatments for children who have brain anomalies such as brain cysts, hydrocephalus, and Trisomy (which includes Patau, Edward, and Down syndromes).

Dr. Martin McCaffrey, a professor of pediatrics in the Division of Neonatal-Perinatal Medicine at the University of North Carolina in Chapel Hill, has a special interest in assisting families with a difficult prenatal diagnosis. He also is a medical adviser to Be Not Afraid (BNA), an organization that trains local groups to support and inform parents who have a prenatal diagnosis. (Miriam’s Blessing is the diocesan ministry based on the BNA model.)

He told the conference audience that presently the “war on life” includes battles with euthanasia, abortion, and in vitro fertilization (IVF), but prenatal diagnosis has not gotten the attention it deserves, “especially for us as Christians.” Part of the reason for the lack of attention is because babies with a brain anomaly are often aborted because parents are not fully informed about other options that could help their babies live and have a happy life.

Prenatal diagnosis was not available before the 1960s, McCaffrey said. As technology advanced, amniocentesis, an invasive test with risk, was used. Now, there is the relatively new noninvasive prenatal test that uses the mother’s blood to check the baby’s DNA, a test routinely given to every pregnant mother unless she opts out. The problem is that the language about a baby’s anomalies has taken on a “lethal, life-limiting slant,” which is not true for every diagnosis, he said. Rather than offering parents a “full menu of choices” that could be available for care of their baby, the lethal language tends to direct parents toward “terminations for medical reasons,” a masked term for abortion.

All the speakers emphasized that many prenatal diagnoses are wrong. Even when they are right, a diagnosis cannot provide an accurate prognosis. The best treatment is to give the baby good prenatal care, and once he or she is born, a more accurate diagnosis can be made by a neurologist, and treatment – if needed or helpful – can begin.

Dr. Michael Egnor, a professor of neurosurgery and pediatrics at the Renaissance School of Medicine at Stony Brook University, who specializes in pediatric neurosurgery, explained that “almost always when people are wrong about prenatal diagnoses, they are wrong in the sense that they underestimate the potential of the child.”

He showed the conference various photos of patients he had treated who had alarming prenatal diagnoses, yet they went on to lead normal lives. He explained the limitations of diagnosing a brain condition prenatally and pointed out that an obstetrician is not trained in interpreting brain images, yet he or she is the one who usually gives the parents a prognosis.

“I believe it is grossly unethical for doctors who have no professional qualifications or personal experience with the management of disabled children to provide prenatal tests,” Egnor said. “There is a tremendous range of outcome in people with various brain anomalies,” he added, explaining that “there’s an aspect to the human spirit that isn’t just brain matter.” Additionally, “Some profoundly disabled still can interact socially,” and “some of the happiest babies around have anencephaly, and some survive for years.”

Dr. Glenn Green, a professor of pediatric otolaryngology at the University of Michigan, has done groundbreaking research on complex airway reconstruction, even inventing several life-saving devices. He has treated many Trisomy 13 and 18 children who tend to experience airway obstruction. He is on the Medical Advisory Board for the Support Organization for Trisomy (SOFT).

Green told the conference that treatments now exist that make it possible for Trisomy children to survive and even thrive. He emphasized that all Trisomy babies should have sleep analyses done to detect breathing problems before leaving the hospital. Checking for hearing problems also is crucial, he said, as Trisomy children often like music, so it’s important to bring sound to them with a hearing intervention.

“Trisomy kids are super happy and if not, something is wrong,” he said. “We can make their lives better, and a lot of times we can underestimate the quality of their lives.”

Attending the conference were Brad and Jesi Smith of Rochester Hills, Michigan, with their 16-year-old daughter, Faith, who has Trisomy 18. Jesi told Today’s Catholic that Faith was making good progress as a toddler and was starting to walk with an assistive device. When she stopped trying to walk, Green diagnosed breathing difficulties and corrected the problem surgically.

“It’s hard to walk when you can’t breathe,” Jesi observed. “She wouldn’t have made it without that surgery,” emphasizing that her family considers Faith a “gift,” who is beloved by her parents and four siblings.

“I feel really sorry for the women who hear this [diagnosis] and don’t have a firm foundation in knowing that there is a loving God who loves this child more than they can and has a purpose for the child’s life, no matter how long or how short,” Jesi said.

Also speaking at the conference were Bridget Mora, the service and communications coordinator of Be Not Afraid, and Dr. Brendan and Maureen O’Connor of Butler, Pennsylvania. The O’Connors recounted their traumatic journey with their son, Luke, who was diagnosed at 20 weeks of pregnancy as having Trisomy. The O’Connors were urged by medical personnel multiple times to abort, which they refused to do. Luke was born at 32 weeks of pregnancy and did have some medical issues, but not Trisomy. He died of an infection at 1 month of age.

The O’Connors now work for better trauma-informed care for families experiencing a difficult prenatal diagnosis, and Maureen has helped BNA with training others how to assist these families during pregnancy and after the baby is born.

The conference was the second on this topic and was co-sponsored by the Office of Life, Marriage, and Family Formation for the Diocese of Fort Wayne-South Bend; Notre Dame’s Office of Life and Human Dignity of the McGrath Institute; the university’s de Nicola Center for Ethics and Culture; Be Not Afraid; and Miriam’s Blessing.