Pro-life doctors, parents challenge concept of “lethal” fetal anomalies

Of the 17 states with laws currently in effect that protect unborn babies from abortion around six weeks or starting at conception, more than one-third allow for abortions on babies who receive a diagnosis of fetal anomalies.

All three states that protect unborn babies from abortion after six weeks or once they have a detectable heartbeat—South Carolina, Georgia, and Florida—allow for this exception. Indiana, Alabama, Louisiana, and West Virginia—four states that protect most unborn babies starting at conception—also allow for abortions of babies with a “lethal anomaly” or who are “incompatible with sustaining life” according to a WORLD analysis of pro-life protections currently in effect.

The absence of this exception in other pro-life states has become a major pressure point for pro-abortion activists. Several Texas women who sued over the state’s pro-life laws traveled out of the state to end the lives of babies who received poor diagnoses. Kate Cox sued Texas in December for permission to abort her baby girl after doctors told Cox the child was unlikely to survive the pregnancy or long after birth. The baby had trisomy 18, a chromosomal anomaly associated with health problems and mental disabilities.

Pro-lifers with experience caring for babies and children with frequently aborted disabilities—both parents and doctors—have observed a bias in the medical community against babies with these diagnoses. They say many providers are unqualified to advise families about what a prenatal diagnosis actually means for their child because all they know is dire predictions from textbooks. Some pro-life doctors and parents want to change the narrative about these so-called “lethal” conditions.

“Prenatal counseling should never be done by doctors who don’t take care of the children over their lifespan,” said Dr. Michael Egnor, the director of the neurosurgery residency program at Stony Brook University in New York. He is also affiliated with Be Not Afraid, an organization that offers support to families facing scary prenatal diagnoses. He said obstetricians’ lack of experience caring for children after birth disqualifies them from giving a family advice about a prenatal diagnosis. “They don’t have any professional expertise in the child’s prognosis,” Egnor said. “They would just go by what they read in a textbook somewhere, which anybody could do.”

Egnor said he encourages physicians in his community to send families considering abortion to doctors who care for children with the disability in question to learn what life really looks like for them. He, for one, has personally cared for children with disabilities who may have otherwise been aborted and often sees that they are both content and loved by their families—a perspective that an obstetrician rarely gets.

For Beverly Jacobson, what helped her the most as she prepared for her daughter Verity’s arrival after receiving a prenatal diagnosis of trisomy 18 in 2016 was connecting with other families online who had living children with the condition. Before finding those communities, Jacobson spent the first weeks after her daughter’s diagnosis assuming Verity would die in utero or soon after birth. She said her genetic counselor was encouraging and supportive of their decision to keep Verity but didn’t know any living children with the condition. She shared dire statistics with Jacobson about low average life spans. “The doctors didn’t know to tell me anything different,” Jacobson said.

A less encouraging neonatologist referred to Verity using a slur for people with intellectual disabilities. He questioned whether Jacobson wanted to give birth to a child who would live a futile life and would be a mental, emotional, and financial drain on the family.

Kathryn Kerr was familiar with this attitude among healthcare professionals before her own daughter received a trisomy 18 diagnosis in utero a little over three years ago. As a nurse, Kerr said she had heard coworkers at the hospital where she worked in upstate New York gossiping about “crazy” families who tried all sorts of interventions for children considered “incompatible with life.” She knew she would have to fight for her own daughter’s dignity. After blood work showed that the baby had a 1 in 17 chance of having trisomy 13 or 18, doctors called to give Kerr the results and asked her when she wanted to schedule the abortion.

Kerr didn’t schedule it, and she says her coworkers critiqued her for that. Some people told her she was selfish for not aborting the baby and asked why she would do this to her child. She said one New York doctor she went to for regular appointments called her crazy for wanting to carry to term and said he would only monitor her, not the baby. She remembers him saying he would not offer a cesarean section in case of emergency and would give the baby no interventions if she survived birth. He would only wrap her in a blanket after birth until she died.

“He used the word ‘vegetable.’ He said she would never have any quality of life,” Kerr said.

Like Egnor, she thinks this attitude stems from the education that physicians receive. “Textbooks tell us it’s a diagnosis incompatible with life,” Kerr said. “So I believe that’s why people are so negative and push abortion. I think we’re taught in school that these babies aren’t going to live anyways, so why waste resources?”

Dr. Martin McCaffrey, professor of pediatrics at the University of North Carolina at Chapel Hill and a medical advisor for Be Not Afraid, knows this from experience. He was involved in crafting the 2023 North Carolina abortion law that protects babies from abortion after 12 weeks of pregnancy. He hoped the bill would have no “fetal anomaly” exception but recognized the legislation wouldn’t have passed without it. He said the exception at least did not use the language of “lethal.”

“There’s no ‘lethal’ prenatal diagnosis that anyone can make,” said McCaffrey. “Meaning, you just don’t know how long a baby is going to live after birth, even if they have what you think they have. And in fact, you may not be right about what you think they have.”

McCaffrey didn’t always think that way. “Until 2009, if you would have asked me, ‘Is trisomy 13 or is trisomy 18 a lethal diagnosis,’ I probably would have said yes,” said McCaffrey. “I was trained that those genetic anomalies, those babies never survive.” That’s how he would talk about these conditions with families who faced these diagnoses. It wasn’t until he met families who had living children with trisomy 13 and 18 at a 2009 event in Washington, D.C., that he realized he had been thinking about these conditions the wrong way. He began researching and found evidence suggesting babies with these conditions who receive the appropriate care have increased chances of survival.

Today, when he counsels families facing these diagnoses, he congratulates them on their baby and asks for the child’s name. He’s often the first person to do so. Then he tries to make clear to the parents that just because they know about their child’s chromosomal condition doesn’t mean they know everything about their child.

“When you talk about a trisomy 13 baby or trisomy 18 baby, if you’ve seen one, you’ve seen one,” said McCaffrey. “They’re all different and very unique and have different medical problems.” While some will die during pregnancy or soon after birth, other people with these conditions, he notes, have survived for decades. But McCaffrey laments that he only tends to see the parents who are willing to fight for their child. Those who decide on abortion after hearing dire predictions from their obstetricians tend to never make it to him.

McCaffrey pointed to one 2016 JAMA study out of Canada that found 10 to 13 percent of children with trisomy 13 or 18 survived for 10 years, a larger number than expected. Meanwhile, children with the conditions who actually received surgical interventions had a higher one-year survival rate—around 70 percent—than those who did not.

Another 2016 study McCaffrey cited found that a prenatal diagnosis of trisomy 13 or 18 was the biggest factor in whether or not a baby survived long enough to be discharged home after birth. Babies diagnosed after birth and treated until that point like any other child had a survival advantage because they were given more significant interventions, like oxygen and feeding tubes.

“If you look at the literature, there’s a pretty good suggestion that some people know that these babies could survive, that they’re not incompatible with life, but they believe they are incompatible with a meaningful life,” said McCaffrey. “So this is a quality of life judgment that some people make.”

According to a 2016 survey of neonatologists’ attitudes about trisomy 18 published in the American Journal of Medical Genetics, 83 percent of respondents agreed that trisomy 18 is a “lethal condition” with nearly 60 percent saying active treatment of newborns with that condition is “futile.” Not even 16 percent agreed that a child with trisomy 18 could have a meaningful life.

Those attitudes spill into the help providers offer to families. McCaffrey said he knows of very few centers in the country that are willing to perform heart operations on babies with trisomy 13 and 18 to address a common heart condition associated with the diagnoses. Jacobson’s daughter Verity never needed the heart surgery, but Jacobson remembers her neonatologist telling her that there was only one surgeon in the state of Nebraska at the time who would even consider performing the surgery on a child with trisomy 18. Today, Jacobson runs Verity’s Village, a support group for parents facing similar diagnoses. The group often encourages families to transfer care if a hospital refuses treatments because of the baby’s condition.

Egnor, of Stony Brook University, said it’s common for providers offering counseling about prenatal diagnoses to tell families that the children with the diagnoses will suffer all their lives and be in constant pain—that abortion would be better for them. “There obviously can be some degree of suffering associated with having a congenital medical problem,” Egnor said. “But the reality is, these kids live often pretty good lives. And many don’t really suffer much at all.” He said most of the suffering falls on the family, as they have to navigate the complexities of caring for a handicapped child.

Both Kerr and Jacobson have experienced that suffering in unique ways. For Kerr, fighting for her daughter, Indiana, meant moving to another state temporarily to go to a hospital where Indiana would receive the care she needed at birth. Starting at 29 weeks of pregnancy, Kerr lived in a Ronald McDonald House in Philadelphia, a mile from a hospital that was willing to treat Indiana like any other baby and offer the interventions she needed. Indiana was born seven weeks later and lived just over six weeks.

While Kerr ultimately had to experience the grief of losing her daughter, she says it was worth it. “You get to hold your baby, you get to see their features. You get to see if they have mom’s eyes or dad’s ears. You get to enjoy time with them, no matter what the situation is,” she said.

Meanwhile, Jacobson’s daughter Verity is still alive at seven years old. For the first few years, Jacobson said caring for Verity’s condition was hard on her, her husband, and their eight other children. Verity didn’t sleep well and had severe reflux. Jacobson had no medical background and lived in the constant fear of Verity dying. She felt like her marriage was on the rocks because she and her husband were barely communicating as they took turns taking care of their little girl. Her teenagers struggled with depression and other spiritual issues.

“But underneath it all, [we knew] that she had a purpose. She was created exactly the way she was for God’s purposes. And I had to believe that however long we had with her was a gift,” said Jacobson. Watching Verity develop, seeing her smile and laugh and celebrate one birthday after the other became big encouragements as the months and years went by.

“As hard as it was, we were still having these moments of joy.”