When Is It Right To Let Your Unborn Baby Die?
I faced a choice: Deliver early or risk a stillbirth.
But I wasn’t so sure I felt the same way. And I may not be alone. After rising alarmingly for more than a decade, figures released in October by the National Center for Health Statistics reveal that the preterm birth rate has now fallen consistently for five years, from 2006 until 2011. This reduction is in large part due to obstetricians’ increasing caution about early delivery—in particular, many hospitals and health care systems have introduced programs to try to delay deliveries that were being scheduled between 34 and 36 weeks to 37 weeks or later, unless the timing is medically warranted. (Early term deliveries, at 37 or 38 weeks, are also being delayed to 39 weeks if possible.)
Of course, the intent of these programs is to delay deliveries without increasing the incidence of stillbirth. Still, Claudia Gyamfi, a maternal-fetal medicine specialist at New York-Presbyterian Hospital/Columbia University Medical Center in New York City, has noticed more caution among obstetricians about delivering early over the past four or five years, even at earlier gestations when there is a medical indication to do so. One option that OBs might offer to a woman whose fetus is at risk but who is reluctant to deliver too early is to begin fetal monitoring only after a gestation is reached when she would feel comfortable delivering, usually 28 weeks. “That’s patient autonomy,” Gyamfi says.
And what factors might play into that autonomy? With the preterm birth rate having peaked above 12 percent in 2006, more Americans today know family or friends raising preemies and are aware of the challenges those children can face even when they are not disabled: developmental delays, learning difficulties, behavioral problems, and other health issues. This firsthand knowledge changes the decision-making calculus for many women and couples. Just visit sites such as Inspire and BabyCenter to see the grueling consideration of options that many pregnant women go through.
On Inspire in 2011, for example, one Australian woman posted to say that she was 21 weeks pregnant and bleeding heavily. The end-diastolic blood flow through the umbilical cord had also reversed—a sign that fetal demise was imminent. She had been told there was no hope for her baby, a boy, and wanted to know from others if that was really true. She went on to say that she had been asking her doctor about delivery and photocopying information about miracle babies weighing only 300 grams who had survived. But, she added, she knew that her son would have to reach 500 grams to have a chance on the outside. (Her baby’s estimated weight was only just upward of 200 grams, though such estimates can be some ways off.) Other women, many based in the U.S., chimed in, holding out hope that she could be admitted and deliver in the next few days or weeks, but one Florida mother warned against a very early delivery, saying that while technology saves many babies, it can never imitate the womb, and that when a baby is very tiny and young, it can be better to let nature take its course. A couple of days later, the original poster reported that her baby had passed inside her.
Struck by the warning, I contacted the Florida mother, who, after being diagnosed with IUGR and preeclampsia, had delivered a little boy weighing a little over 600 grams at 26 weeks a couple of years ago. During a four=month NICU stay, her son was on a ventilator, underwent heart surgery, and suffered extensive damage to his lungs and brain. Ultimately, she and her partner made the decision to withdraw life support. She writes on Inspire that she didn’t realize she had the choice to wait longer before delivery but now does. (This isn’t to say that had she waited, she and her baby would have been fine.)
Despite these poignant online discussions, the ethics of very early delivery dilemmas mostly aren’t discussed publicly offline. “Assessing risks of stillbirth is a private decision, but so devastating to the individual families that they don’t tend to talk about it much,” Roger Young, an obstetrician at Fletcher-Allen Hospital in Burlington, Vt., told me. It’s easy to confirm that women regard such details as private. Inspire’s preemie board has recently seen a lot of discussion about privacy settings and the possibility of information posted there under screen names getting inadvertently linked into Facebook or Twitter where friends or family that aren’t supposed to know will see it. When I contacted women who had described online their experiences risking or opting for stillbirths to request interviews, most did not respond, and one removed some of her online material the next day. (As a result, I’ve only included case details that I feel are necessary to describe the issue.) Young says instances of women allowing a late-stage fetal demise, as I was considering doing, only rise to public attention when hospital staff disagree with the decision and get a court order to force a delivery. That happened most famously in the 1987 case of Angela Carder, a pregnant woman discovered to have terminal lung cancer who at 25 weeks did not consent to a C-section intended to prevent her fetus from dying with her. A court granted the hospital permission to operate, but after the baby and Carder both died, an appeals court vacated the ruling, leading to a legal precedent that a woman may not be forcibly delivered.
Eugenie Samuel Reich is a science journalist in Cambridge, Mass.