ROBERT SIEGEL, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.
MICHELE NORRIS, host:
And I'm Michele Norris.
This summer in our series "Beginnings," we're exploring the joys and the challenges of pregnancy, childbirth and early parenting. Today, we turn to a topic that's difficult to talk about, but one that occupies the minds of so many new parents: sudden infant death syndrome, or SIDS. The thought of a baby dying suddenly and without any explanation is one that keeps parents awake at night, fearing the worst.
Yet as NPR's Andrea Hsu reports, the mystery surrounding SIDS is not what it once was. And in fact, some are questioning whether the term SIDS remains relevant at all.
ANDREA HSU: In the U.S., more than 2,000 babies die of SIDS every year, according to government figures. And Wayne County, Michigan, sees far too many unexpected infant deaths - 50 to 60 a year, most of them in Detroit.
For the past 11 years, the task of investigating those deaths has fallen to one woman.
Ms. PATRICIA TACKITT (Pediatric Mortality Investigator): We go out to see the family, usually immediately.
HSU: Patricia Tackitt is a pediatric mortality investigator. She'll spend anywhere from an hour to five hours talking with the family. She'll use a doll to help tell the baby's story.
Ms. TACKITT: I hand the doll to the parents, and ask them to show me where they placed the baby down, when they last saw it alive and how they found it, and who and what was around.
HSU: In all, Tackitt has gone to the scene of more than 500 infant deaths - so many, she stopped counting. In almost all of the cases, she says, she finds the same thing: that the baby was in an unsafe sleep environment - face down, covered by a blanket or pillow, lodged between sofa cushions, in bed with a parent who fell asleep and rolled on top of the infant, evidence that points to accidental suffocation, not SIDS.
Ms. TACKITT: There are some deaths we cannot prevent. These are not those deaths. The vast majority of these are preventable deaths. There's been very, very few that we've seen that could not be prevented.
HSU: SIDS is defined as the sudden death of an infant that remains unexplained after a thorough case investigation. It's supposed to be the diagnosis given when everything else has been ruled out.
But, Tackitt says, often the word SIDS comes up prematurely.
Ms. TACKITT: We find that in many cases, families have been told from the time the ambulance drove up, to the time that the clergy saw them in the emergency room, or the doctor or the nurse, that this is going to be a SIDS death. And all that means is, we don't know.
Why would we start out saying we don't know when we haven't even looked yet?
HSU: Some would argue that a SIDS diagnosis offers compassion in a moment of distress - a way to say to parents, there wasn't anything you could have done to stop this. It wasn't your fault.
Patricia Tackitt's boss, Wayne County Chief Medical Examiner Carl Schmidt, takes issue with that approach.
Dr. CARL SCHMIDT (Chief Medical Examiner, Wayne County): I think that's cruel. I think actually sitting down with a parent and telling them what happened is much more humane than trying to obscure the reasons why that infant actually died. Most people really wanted to know what happened, so they won't do it again.
HSU: In Wayne County, it's been four years since they last signed out a death as SIDS. And that's true elsewhere, too.
Dr. RACHEL MOON (Pediatrician/Principal Investigator, Children's National Medical Center): In D.C., I don't think we've had a SIDS - a true SIDS - case in several years.
HSU: At Children's National Medical Center in Washington, Rachel Moon looks through infant death statistics for the District of Columbia.
Dr. MOON: All of the babies who die suddenly and unexpectedly have all died in unsafe sleep environments. These are all cases that could have been prevented.
HSU: Moon is a pediatrician. She also serves as chair of the American Academy of Pediatrics' taskforce on SIDS. Back in the early '90s, it was the academy that came out with the recommendation that babies be placed on their backs to sleep, not on their stomachs. The Back to Sleep public health campaign that followed proved hugely successful.
As back-sleeping rates soared, the SIDS rate dropped. By 2000, it had fallen 50 percent. But since then, progress has stalled.
Dr. MOON: Oh, it drives me crazy. It absolutely drives me crazy.
HSU: About a quarter of parents in the U.S. say they don't sleep their babies on their backs. Among African-Americans, it's about half. And statistics find that African-American babies die of SIDS at a rate twice that of whites.
Rachel Moon has been researching why so many people disregard the recommendations. She's found everything from misconceptions about the risks of choking to distrust of doctors, to confusion and skepticism.
Dr. MOON: Right now, what's happening is, you tell people that SIDS is when a baby dies and you don't know why. And so then, when you tell them, then, that they should put their baby on the back, sometimes they turn to you and say well, wait a second, how can you tell me that putting my baby on the back is going to help to prevent this thing that you don't know what causes it?
(Soundbite of piano music)
HSU: In nearby Baltimore, public health officials have replaced the word SIDS with these ABCs: Alone, Back, Crib.
Ms. AYANA WILLIAMS: I'm Ayana Williams(ph). I have one daughter, she's 12 years old. And I had a younger son, he would have been 11 months old...
HSU: In a public service announcement, three mothers whose infants died while sleeping deliver a safe sleep message, with almost no mention of SIDS.
(Soundbite of a SIDS Public Service Announcement)
Unidentified Woman #1: A safe crib should have absolutely nothing in it but the sheet, a mattress, and actually nothing else - no blankets, no bumpers, no bears, no toys...
HSU: The hope is a simpler message will help save lives.
I ask pediatrician Rachel Moon if she can imagine dropping the word SIDS at some point.
Dr. MOON: Oh yeah, I can imagine a time when we just talk about safe sleep. And I think we're starting to get there. I think if people know that something is preventable, and they can visualize it happening, then they're more likely to take steps to try to prevent it.
HSU: For now, though, Rachel Moon says SIDS is a term people are familiar with, so she'll continue to talk about SIDS prevention. She does also believe that there are some true SIDS cases out there, though she says they're very rare.
Andrea Hsu, NPR News, Washington.