One counseling provider handed a couple a newborn onesie printed with the words "little heart warrior." The parents had already learned their fetus had a heart defect so severe it would require surgery in the first days of life to survive. "I found that offensive and distasteful," the parent told researchers years later.
That moment appears in a new qualitative study in PLOS One, in which a team led by Grace Knowles and Joyce L. Woo at Ann & Robert H. Lurie Children's Hospital of Chicago interviewed birthing parents about a decision that medical research has largely stepped around: what happens when a family, told their baby has a severe congenital heart defect, chooses not to pursue surgery.
Congenital heart defects are the most common birth defects in the United States, affecting roughly 1 in 100 live births. About a quarter are severe enough to need surgery in the newborn period. When a defect is caught before birth, families in places where the options are legally available can choose among three paths: terminate the pregnancy, plan for a hospice birth (comfort care without surgery), or plan for surgery after delivery. Nearly all the published research on prenatal counseling has drawn on parents who picked surgery. The authors argue that skew leaves clinicians guessing about what the other families needed and never got.
What the team did
The researchers identified 20 eligible people who had received multidisciplinary counseling at Lurie Children's between June 2019 and March 2023, and 10 agreed to sit for interviews lasting 60 to 90 minutes. Seven had chosen termination; three had chosen hospice birth. Interviews happened on average 2.9 years after the counseling session, a deliberate gap the authors built in to allow bereavement time, at the acknowledged cost of fuzzier memories.
The interviewer was a nurse practitioner in perinatal palliative care who had been present at each family's counseling meeting. That existing rapport is why the team thinks people spoke so openly. It also means participants may have softened their criticism, which the authors name as a limitation. Three analysts coded the transcripts separately, and the full team of eleven refined the themes.
The sample is narrow in ways that matter. Nine of the 10 identified as non-Hispanic White. All had at least a bachelor's degree, all were married and employed, and nine had commercial insurance. This is a study of well-resourced families in Illinois, a state where the right to termination is protected by law and where multidisciplinary fetal counseling is available. The experiences of poorer, unmarried, or uninsured patients, and of anyone facing legal restrictions after the 2022 Dobbs ruling, are absent.
What parents said
The complaint that ran deepest was about scope. Counseling covered survival odds and surgical staging thoroughly, but not the rest of a family's life. One parent said that before deciding on termination, "there was no real mention of how ... her [sibling's] life could potentially be impacted." Others raised money directly: the cost of care, the loss of income, and in one case the fact that the birthing parent carried the family's health insurance and could not stop working. "So then if I wasn't working, where would our insurance come from?"
Several said information about their chosen path had to be pried loose. One parent who had a surgical D&E termination said she had to "really push for what does that actually mean," and still found the reality different from what she had understood. Another described her first impression of hospice as "so passive, and just almost non-committal," until she learned more.
What parents praised was equally specific. They liked having ten specialists in the room, so that a question one could not answer got passed to someone who could. They liked a cardiologist drawing diagrams of what the heart looked like now and what surgery would change. Above all, most wanted neutrality. As one put it, "if somebody leaned a certain way, I think it maybe would have given us false hope." A few felt the opposite and wished a doctor would just tell them what to do, which is why the authors suggest clinicians ask directly whether a family wants a recommendation rather than assuming.
Parents who chose hospice valued having had termination on the table even though they declined it. One said, "even though I didn't do it, it was still an option that I could have chosen." Stigma followed both groups. Termination parents feared judgment; a hospice parent described an unsupportive neighbor and simply stopped explaining herself.
Why it matters
Ten interviews cannot tell you how common any of this is, and the authors do not claim otherwise. What the study offers is a list of things that went wrong and right, described by people whose perspective almost never reaches the literature.
The practical target is training. Skills in neutral, empathetic counseling about reproductive choice are standard in palliative care but are not a routine part of cardiology or maternal-fetal medicine training. Prior work the authors cite found that cardiologists' own beliefs shape whether termination and hospice even get mentioned. A recent survey found only about 40 percent of major North American cardiac centers run joint counseling with cardiologists and palliative care specialists together.
The other target is content. If families are weighing sibling care, job loss, and insurance anyway, and the evidence on surgical families suggests those costs are real, then leaving them out of the conversation does not make the decision cleaner. It just makes it less informed.