Even Doctors Avoid Talking About Stillbirth

stillbirth, prenatal loss support group
Facilitators Jeanine McGrath, center left, and Andrea Cumberland, center right, talk with members of a prenatal loss support group at Holy Cross Hospital in Silver Spring. With them are Aver Lamb, partially visible at left, Marie Monday, far right, and Kim Lewis. (Ricky Carioti / The Washington Post)
Washington Post Staff Writer
Tuesday, July 7, 2009

About a month after our son died, my wife and I made our first visit back to her obstetrician's office hoping to get answers to some of the questions that haunted us.

We had already learned why he died a day before he was supposed to be born; an autopsy showed his umbilical cord had become knotted. What we were left with was a helpless feeling, exacerbated by the fact that our son's death blindsided us. Over the previous year, we had absorbed countless pieces of pregnancy literature and fiercely adhered to our obstetrician's guidelines for a healthy pregnancy. While we knew that stillbirth is possible in every pregnancy, no book nor our doctor ever mentioned the term.

So we asked our doctor: "Why not?"

"Pregnancy is a happy time," she told us sheepishly, from behind her desk. "Nobody wants to hear anything about something bad, much less death."

We left her office with a sense of betrayal and frustration. We had done a little homework since our son's death and were stunned to find how common cases like ours are -- yet how rarely people talk about them.

There are about 26,000 stillbirths annually in the United States -- one in about every 160 pregnancies, according to the Centers for Disease Control and Prevention. That is 10 times the number of deaths attributed to sudden infant death syndrome, which has been identified as a key public health issue, and four times the incidence rate of Down syndrome, for which prenatal testing has become almost ritual. Domestically, there are 2 1/2 times more stillbirths annually than deaths from AIDS.

Several doctors told us that they don't see any point in discussing stillbirth, that it's a catch-all term for an event, and one that is frequently unexplained. If doctors knew the causes of stillbirth or its telltale signs, they say, they'd warn parents -- and take preventive action.

But if you don't talk about an issue, you'll never learn more about it. Take SIDS: Awareness campaigns triggered research that showed babies were suffocating when they slept facedown. Consequently, such measures as ensuring that babies sleep on their backs and on firm mattresses have become fundamental orders for parents of newborns.

What if similar research had been done on stillbirths? Might increased fetal monitoring during the final trimester have spotted my son's tangled umbilical cord? While we marvel at sonograms and their ability to show a fetal heart beating, they are as yet unable to detect an umbilical cord in utero. We can't know if improved technology or more stringent standards of monitoring can lower stillbirth rates unless we do the research.

"It's the trade-off -- you are going to frighten a lot of people" by discussing stillbirth, said Ruth C. Fretts, an assistant professor of obstetrics and gynecology at Harvard Medical School and chair of the scientific committee for the International Stillbirth Alliance, a nonprofit collaborative that seeks to increase the understanding and prevention of stillbirth. "It seems like a lot of intervention. We spend about an hour during the first visit talking about screening for Down syndrome. We don't spend any time at the end talking about [stillbirth] . . . . We haven't framed the question appropriately enough to draw attention to stillbirth. People didn't count them [as deaths] for so long."

Jason Collins, a Louisiana obstetrician who heads the nonprofit Pregnancy Institute, which promotes improved fetal monitoring for full-term births, says there's little talk about stillbirth "because doctors are afraid of the repercussions."

According to Fretts's research, the leading cause of fetal death after 28 weeks is an unexplained source, dwarfing such culprits as fetal malnutrition and placental abruption. In other words, the most common result after a stillbirth is a doctor telling grieving parents, "I don't have an answer for you." Several doctors told us privately that many OB-GYNs fear charges of malpractice following a stillbirth, leading them to avoid citing a cause of death.

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