SIDS advice: has it gone too far?

Sudden Infant Death Syndrome, also known as crib death, is the unexpected death of an apparently healthy infant under one year of age. About 150 Canadian babies die of SIDS every year; most are between the ages of two and four months. SIDS is not a diagnosis; it simply means the baby’s death cannot be explained, even by an autopsy.

I get uneasy when experts from a specialized field dispense parenting advice based on their narrow realm. I call it tunnel vision advice. It seeks to solve one problem, but sometimes ignores relevant knowledge from other sources, and how well the advice fits with the realities of life.

This is where we are these days with the advice around “safe sleep,” aimed at reducing the incidence of sudden infant death syndrome (SIDS) as well as accidental smothering. Scientists, physicians and public health professionals quite rightly want to solve the tragic mystery of SIDS; they’ve done reams of research to identify factors common to the babies who have died. This is good. One finding has undoubtedly saved lives: Since they started telling us to put babies on their backs for sleep, the North American SIDS rate has been cut in half.

But, as research identifies more associations, the directions keep piling up. Moreover, they’re getting complicated, with more potential for undesirable side effects. And they could start to undermine the instincts parents must develop about how to care for their children.

Pacifier politics

For me, the last straw was the recommendation from the American Academy of Pediatrics (AAP) that parents give their babies pacifiers to protect against SIDS. This was part of the AAP’s new guidelines, released in October, to reduce the incidence of SIDS. The document covered everything: back sleeping, where babies should sleep, the dangers of maternal smoking, right down to the firmness of mattresses and thickness of bumper pads. But the recommendation about pacifiers caught the eye of the news media.

The AAP did not say babies must have pacifiers; rather, “consider offering a pacifier at nap time and bedtime.” That boiled down to headlines, however, like “Pacifiers May Decrease SIDS Risk” (Fox News, October 11).

To me, there’s a huge difference between telling parents to put babies on their backs and to offer a pacifier. The “Back to Sleep” campaign came out of a broad, worldwide scientific consensus; in contrast, there is nothing resembling scientific consensus about the alleged protective effect of pacifiers.

Experts around the world have looked at the same research and have drawn different conclusions. In fact, the pacifier-SIDS issue was debated at an international meeting of SIDS experts in Canada last summer. According to Aurore Côté, a paediatric specialist in respiratory medicine at McGill University Health Centre, the consensus was that there isn’t enough evidence to recommend pacifiers to prevent SIDS, and that more research was needed.

There’s more. Experts from New Zealand, England and the Netherlands pulled out of a review of pacifier-SIDS research because they disagreed with some conclusions drawn by Fern Hauck, the American paediatrician who went on to be lead author of that paper. Hauck’s article in the journal Pediatrics provided much of the basis for the AAP’s recommendation.

The three dissenters acknowledge that research has found an association between pacifier use and an apparent reduction in SIDS risk. But they say there are too many questions to be answered, including risks of pacifier use, before giving parents advice — a position they argue in a separate paper submitted for publication.

Another leading SIDS expert, British paediatrician Peter Fleming, thinks the risk of not using a pacifier may apply mainly to babies who habitually use them, then don’t, for whatever reason. In some studies, the rate of usual pacifier use was the same in babies who died of SIDS as it was in control groups of healthy infants of the same age from the same population. The most noticeable difference was in the “last sleep,” as the researchers call it (for SIDS babies, the sleep in which they died; for the control group, the last sleep before the parents were interviewed). The babies who died were less likely to have had a pacifier the last time they went to sleep.

Hauck thinks this finding is unimportant, but Fleming isn’t so sure. He says sucking seems to help babies regulate their breathing, a conclusion he’s drawn by observing videotapes of babies sleeping. “While sucking, sleeping infants breathed more slowly and deeply and had fewer episodes of minor obstructed breathing,” he says. But other kinds of sucking (on fingers, thumb, mom’s empty breast) do this as well as pacifiers.

Here’s what particularly concerns Fleming: While watching the videotaped babies who used pacifiers, he noticed they seemed to have forgotten how to suck their thumbs and fingers, something all babies do in the womb. “I’m concerned that increased pacifier use could suppress a fundamental human behaviour, and we don’t know what the adverse consequences might be,” he says.

Other research has shown that changes in routine seem to increase the risk of SIDS: babies sleeping on the stomach when they usually sleep on the back, bed sharing when they don’t normally bed share, even sleeping on the back when they normally sleep on the stomach. Perhaps suddenly having to do without a pacifier also falls into this category? No one can say, but advice to use pacifiers is premature.

Advice vs. real life

Inconclusive evidence isn’t the only problem. Putting babies to sleep on their backs was relatively easy to explain and follow, though it did come with a significant side effect: a flattening of the skull that’s been showing up in some babies.

The pacifier advice is more complex and pacifiers come with baggage, as many of us know. While providing comfort, they’re associated with crooked teeth, increased risk of ear infections and potential interference with breastfeeding. The AAP covers those concerns by advising parents to limit duration of pacifier use, keep pacifiers clean and replace old ones.

Can you see how it’s getting a little wacky? Let’s look at what you have to do to follow the AAP’s advice to the letter:

Your baby should sleep in your room, but not in your bed. You can nurse him in bed (which, biologically, tends to make both mother and baby sleepy), but you have to rouse yourself and take him back to the crib. That’s because he must sleep alone on a fairly hard mattress in a virtually empty crib, preferably with no blanket. If your baby wakes up four times to nurse that night, sorry, you gotta shuffle back and forth each time.

Now, about that pacifier. Offer it, but don’t push it. Offer it only for sleep. If you’re breastfeeding, don’t offer it until your baby is a month old. If he comes to want it all day, as many kids do — tough. Oh yes, once the baby is a year old and his soother addiction is well entrenched, get rid of it because the risk of SIDS is now past.

SIDS is a fear for every parent of a newborn: Who among us hasn’t crept in and leaned over the crib, watching for the rise and fall of that tiny chest. And, despite the reduction in deaths (which is partly due to a narrowing of the criteria), it still happens 150 times a year in Canada. That’s three tragedies a week that we’d all like to see eliminated.

But again, how much advice is too much?

Bed-sharing blues

Here’s another disconnect between safe sleep advice and real life. Everyone agrees mothers should breastfeed for the sake of their babies’ health. But for the sake of SIDS reduction, these same mothers are warned not to sleep with their babies.

I’m sorry. Breastfeeding and bed sharing go together — not necessarily all night, every night in every family, but if you’re encouraging mothers to nurse, you have to expect a fair number will find their babies in bed with them. I’ve talked to formula-feeding moms who do it too.

Martin Lahr, a paediatrician and epidemiologist in Salem, Oregon, found more than three-quarters of 1,776 mothers surveyed slept with their babies sometimes. (In a Todaysparent.com survey of more than 2,000 parents, two-thirds said they slept with their babies sometimes, usually or always.) Fleming will soon publish data showing that in the UK, the increase in bed sharing has coincided with the decline in SIDS — a finding at odds with research that concludes that bed sharing increases SIDS risk.

But most of the medical establishment (including the Canadian Paediatric Society) now says bed sharing is risky. So what’s a mother to do? Ignore the biological reality that is drawing her and her baby together in bed? Admittedly, this does not affect all women the same way, but it’s there and can’t be ignored.

James McKenna, an anthropology professor at Notre Dame University who studies co-sleeping, told me something interesting about the Arm’s Reach Co-sleeper. This little sidecar bed, which McKenna has endorsed, attaches to the adult bed, keeping baby near but out of “danger.” But, McKenna says, “I can’t tell you how many conversations I’ve had with mothers who said, ‘I’ve got one of those Co-sleepers, but I can’t get the baby to stay in it. He wants to be right against me.’” McKenna’s research shows that proximity to a mother’s body during sleep provides many of the SIDS protections (lighter sleep, more arousal, more oxygenation) that some speculatively credit to pacifiers.

That’s why you can’t tell women to breastfeed and then tell them they can never sleep with their babies. Tell them how to co-sleep safely (for example, don’t do it on a couch, waterbed or other unsafe surface, or if you’re drunk, high, or if you smoke). Lahr says the research on SIDS and bed sharing is mixed for babies under 11 weeks of age. “I wouldn’t recommend bed sharing with babies that young,” he says. Other studies show that for babies over 11 weeks, bed sharing can be safe, if the mother does not smoke.

For his part, Fleming thinks it’s bizarre that some authorities focus on the general risk of bed sharing, which is minimal for non-smoking parents, when smoking is such a big factor. He estimates from his data that the risk of death from SIDS increases 100 percent for every hour of the day a child spends in a room where anyone is allowed to smoke.

Research vs. instinct

Parents need to understand there are biases all over the place. I have them. I’m a big believer in breastfeeding so I’m leery of anything that may interfere with it. And while I am not a card-carrying family bed devotee, I think human babies (who, as McKenna taught me, are the most neurologically immature of all primates at birth) have a biological need for physical closeness with parents, which does not suddenly stop when the sun goes down.

Doctors and scientists have their own biases. Some evidently think bed sharing is abnormal. Ten years ago, many would have told you not to let your baby sleep in your room (something the AAP now espouses).

But what I’m really for is parents who are tuned in to their infants. I think a baby’s best chance for optimal development lies with parents who develop good learned instincts. If a mother is going to offer a pacifier, for example, I want her to do it because she’s responding to her observations of her baby’s needs — not because she’s following a rule arising from research that experts are still arguing about. And not because she’s been taught that man-made devices are more reliable than her own body and wits. (By the way, since 2000, almost 350,000 pacifiers have been recalled in Canada due to safety concerns.)
Let’s be fair though. Guidelines about safe sleep have their place. If an epidemiologist believes an apparent risk factor is significant, she can scarcely withhold that information from parents. But there’s a point where too many rules can interfere with learned parental instinct, which is the thing that really keeps babies alive.

And finally, let’s not forget that all these identified factors — prone sleeping, not using a pacifier, overheating, blankets, soft bedding, bed sharing — do not, on their own, cause SIDS. Current thinking is that babies who die of SIDS are not wholly healthy as was previously thought, but have a genetic vulnerability that makes them succumb to an otherwise minor infection, a blip in the breathing or stress to the arousal system.

Researchers are looking at several genes that might increase an infant’s vulnerability to SIDS. Peter Fleming is studying interleukin 10, a gene involved in the body’s general inflammatory response to infection. Debra Weese-Mayer, a paediatric physician-scientist at Rush University in Chicago, has reported on several genes, one of which works with the hormone serotonin to regulate the body’s autonomic nervous system.

Interesting — encouraging even — but at this point it’s still a bunch of really smart people looking for needles in haystacks.

Weese-Mayer has mixed feelings about some of the SIDS prevention advice, though she feels it’s essential to let parents know about the risks that have been identified. “But I’m not sure it’s a good thing to throw all of this at parents,” she says. “We are aggressively working to find the underlying genetic basis for SIDS and I hope we find the answer soon. I worry we are overwhelming parents with all of these directions and risking that the end result is that parents will ignore them all.”

The Smoking Gun

When parenting advice is being invented, the behind-the-scenes process can be as informative as the results. For example, the Scottish study often cited as primary evidence that bed sharing is a general risk factor for SIDS was rejected by three journals before finally being accepted. Here’s another dilly. The tobacco company Philip Morris hired a toxicologist to look at the research on all risk factors for SIDS including, of course, harmful effects of tobacco smoking. Originally, the consultant concluded that the weight of evidence showed that smoking, both prenatal and postnatal, increased the risk of SIDS. But his final report said somewhat less — specifically, that the effects of postnatal second-hand smoke were “less well established.” Researchers examining his work later (looking for evidence of influence from the tobacco company) found handwritten notes on early drafts suggesting this change. Their paper was published in Pediatrics in March 2005.