Science Has No Explanation for the Leading Killer of Babies, Only a Name: S.I.D.S.

updated 04/07/1980 AT 01:00 AM EST

originally published 04/07/1980 AT 01:00 AM EST

One moment an infant is apparently healthy, sleeping soundly. A few moments later, without a struggle or sometimes even a sound, the child is dead. The killer is Sudden Infant Death Syndrome, and more babies under one year of age die from it than from any other cause. For years known colloquially as crib death, SIDS remains almost as stubborn a medical mystery as it was in antiquity, when it was first observed. Carolyn Szybist encountered it personally in 1965. Placing her 11-week-old son Lawrence in his crib and bidding goodnight to her husband and young daughter, she drove to a nearby Chicago hospital, where she was an emergency room nurse. The next morning she entered the nursery and discovered her tiny son's lifeless and rigid body. Experiencing the waves of grief, guilt and fatalism that she later learned are common among SIDS parents, Szybist flung herself into organizing a chapter of the National SIDS Foundation. Today, as executive director of the foundation, she oversees 57 chapters in 35 states and lectures around the country. Szybist and her husband, Tony, Midwestern sales manager for a medical diagnostics firm, live in Chicago with their daughter Lorraine, 16, and son Gerald Patrick, 10, born four years after Larry died. For Linda Witt of PEOPLE, Szybist, 41, shed light on recent gains in knowledge about SIDS and shared her own experiences in coping with it.

Is the cause of Sudden Infant Death Syndrome known?

No. It really is a disease of exclusion. When you rule out every possible other cause and you can't find the reason a seemingly healthy baby died, that's SIDS. We haven't been able to explain it, only give it a name.

How many lives does SIDS claim?

We used to say about 25,000 per year, or about one in every 350 live births. Now it's about 6,000 to 7,000 a year, or one in every 500 live births.

Does that mean progress is being made?

It really represents a general improvement in prenatal and neonatal care in this country. The infant mortality rate has dropped and mothers are having fewer children. We are also eliminating from the statistics some causes of death that were once falsely classified as SIDS.

Which babies are likely victims?

Typically, the age is 1 month to 7 months, although SIDS can strike at 1 or 2 days or up to 5 or 6 years. It is slightly more common in boys than in girls. Second and third babies are more prone to SIDS than firstborns. Orientals have a low risk; black and American Indians have a higher risk than the population as a whole. Beyond that, victims may have in common low birth weight, prematurity and B-type blood. But there really are no predictors. Not one of these statistics encompasses even 50 percent of the victims.

Is SIDS a disease of the poor?

That's a common misconception. Some victims do share a lower socioeconomic background. Statistically, a baby born to an unmarried 16-year-old living in the inner city does run a greater risk. If you gave every mother proper prenatal care and made sure all babies were born into a perfect environment, you might lower the SIDS rate by a third—but that was just one researcher's guess. The facts just don't bear out the "poor person's" tag. An eight-pound, full-term infant born to affluent suburban parents may also die of SIDS.

Is it true that SIDS strikes perfectly normal, healthy babies?

Most researchers no longer believe these babies actually are normal. But the abnormalities are very subtle and cannot be picked up through the usual medical procedures. Normal children shouldn't simply die.

What are the possible abnormalities?

We now know, for instance, that in about four percent of SIDS cases we can find evidence of infant botulism [which can cause respiratory arrest]. But these are not ill-kept kids, fed with dirty spoons. They seem to be babies who have a special, acute reaction to the botulism spores which occur naturally in the environment. Researchers usually find fluid in the lungs, slight traces of viral infection, tiny hemorrhages in the chest or inflammation of the minute air passages leading to the lungs. Occasional abnormalities are also found in the brain stem—the portion of the brain at the base of the head that controls breathing response. As all this generally suggests, the most significant and consistent things all seem to be subtle clues to breathing abnormalities.

What is the most prevalent breathing abnormality related to SIDS?

The research leads us to concern about sleep apnea—times when an infant seems to forget to breathe. Tiny periods of apnea in infants—say, two to five seconds—are normal. It's the dangerously prolonged periods of 20 seconds or more that may be linked to SIDS. Major work is now being done on babies' response to stimuli which trigger breathing. We find that when exposed to decreased oxygen levels or increased carbon dioxide levels, normal children arouse from sleep sooner than apneic children or "near-miss" SIDS kids—those who have been revived in time. Unfortunately, no test is simple enough and inexpensive enough now to screen healthy full-term infants.

What types of babies should be evaluated for SIDS potential?

Ideally, all "near-miss" SIDS kids and very small premature babies. Some doctors also feel it would be appropriate to evaluate all healthy babies who have had siblings or first cousins die of SIDS.

Does that mean there is a genetic component to SIDS?

Periodically we see a SIDS cluster on a family tree—but it's very rare. It raises the possibility that we may find some genetic links for some causes of SIDS. But SIDS is many things, and we think few of those will ultimately turn out to be genetic.

What can be done for infants with identified apnea problems?

Apnea monitors are a godsend. But in the entire country, there are perhaps only a thousand babies on monitors at any one time.

Aren't they expensive?

Yes—they cost more than $1,000 per unit—and they're not easy to live with, either. The babies have to be hooked up during sleep with disposable wires, so it requires weekly stocks of supplies. And the house must absolutely be set up around that baby. You can't be more than 10 seconds away, and you can't even hear the alarm if you are showering or running the vacuum. Usually gentle stimulation will reinstate breathing in a sleeping baby, but if you have to use cardiopulmonary resuscitation, where do you get babysitters trained in that? It sounds like a nightmare; but believe me, the alternative is the nightmare.

Did you blame yourselves for your son Larry's death?

We were hit with a mystery. I couldn't believe my child could die of pneumonia—that's what it said on his death certificate—and that I, a nurse, could have missed all the signs. If you have a child with a major disease, you have a few hours at least to make him comfortable. You can prepare yourself, if nothing else. But when your baby just dies, it's so shocking—and you weren't there to comfort him at the moment of death. A lot of SIDS parents find that newspapers report their babies died of "suffocation." This just reinforces their guilt.

Do officials still accuse SIDS parents of negligence or child abuse?

There is more understanding than there used to be. Yet at least once a month we receive inquiries for help from parents who are being investigated because their baby died.

How did you come to terms with the death of your son?

It was nearly three years after Larry died that I found other parents to talk to. It took my husband, Tony, a lot longer to even discuss it. Our daughter Lori used to think he didn't care—now she knows there are all kinds of grieving, not all of them verbal.

How was Lori herself affected?

She was nearly 2 at the time, and that Christmas she got a baby doll. When she opened the box she became hysterical. Even as a teenager, when her friends were all making money babysitting, she couldn't bring herself to do it.

Have changes in the laws helped families recover?

Yes. Seven years ago SIDS wasn't even a legal way to die—it couldn't be listed on a death certificate. The 1974 federal SIDS Act mandates autopsies at government expense for all babies who die unexpectedly. That is extremely important, but it's very common for parents to wait months or years for an explanation from the medical-legal system. We don't think that is the "reasonable" period of time the act stipulates. We think 48 hours is the longest parents should wait to learn why their baby died.

Do you encourage parents to try again after losing a baby to SIDS?

It took me three years to build the courage to try again. The first advice you hear is, "Get pregnant right away." But I don't think people should try again until they're emotionally ready.

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