Today we’ll be looking at the evolving understanding of sudden infant death in history, focusing on the developments in the United States during the 20th century.
Content Warning: This post will discuss sudden infant death, infanticide, and child abuse. If you know that you are uncomfortable with this subject manner then please do not read on.
I debated on whether to give the modern definition of SIDS since most viewers will either know it, or if not, it might be good to learn about it in the order humanity came to understand it. But since this is going to be a four-parter, I decided to explain our current, generalized understanding of SIDS.
Sudden Infant Death is a diagnosis of exclusion after the sudden unexpected death of an infant(which is why you may have seen SUID or SUDI, which is the same thing from a different specialty, usually pathology) one year or under (some places cut it off at nine months old for example).
A diagnosis of exclusion is made after all other diagnosis are ruled out. For SIDS it comes about after a post-mortem examination or autopsy by a forensic pathologist who considers both the patient’s history as well as the physical findings. If no definite cause of death can be diagnosed then the death is said to be one of SIDS. Most importantly, it means that a baby who died from asphyxia, whether from suffocation or strangulation, did not die from SIDS. This is something that was discovered and then confirmed in the 1930’s and 40’s but which is to this day a matter of some confusion for journalists, parents, and baby gear manufacturers alike. We know how suffocation kills and we know how to prevent it. We do not know how or why babies die from SIDS by its very definition, and therefore there is nothing that can be done to prevent it– and parents should be made to understand this as soon as they become parents: nothing you buy, nothing you do or don’t do is preventive when it comes to SIDS.
It’s most commonly associated with infant nighttime sleep but SIDS occurs day or night, in cribs, car seats, electric swings, in family beds, and even heartbreakingly, in-arms. Without understanding why, SIDS most frequently occurs in low-income families, to babies with younger mothers and to mothers with less prenatal care– regardless of ethnicity. However, Native Americans, especially Native American baby girls, have the highest rates of SIDS. While the rates of SIDS went down in the last quarter of the 20th century, likely due to increased medical technology for diagnosing fatal conditions that previously would have been reported as undetermined or SIDS, they have remained plateaued for the last 25 or so years at around 3500 deaths per year in the United States (Lafrance, 2016).
And it still remains a taboo subject, there are chances that you know someone who has lost a baby to SIDS but they don’t talk about it because the age-old stigma remains. A friends/client of mine lost a baby to SIDS: the family had a young child when they found out they were expecting twins. They bought a double bassinet so they could sleep close together during their first weeks while rooming in. They are healthcare professionals, they were experienced parents and did all the “right” things. But one morning dad awoke early to check on the twins and he found one unresponsive, he looked like he was asleep but had died in the night. Fortunately, my friend shared her story, and the story of her baby’s short life; her children have grown up knowing they had another brother. But while she was attending group counseling, so many of the other parents didn’t feel that they could or should talk about it– would people blame them? they already blamed themselves even if they knew it was irrational. For people expecting their first child, they went from being parents and all the life changes and planning that entails to not having a baby. They were parents, are they still parents without a child? What can they say when someone they attended prenatal classes with bumps into them and asks about the baby?
So I want to make very clear before we start on this series that SIDS is a real phenomena, its the worst kind of cruelty and so much more so because we just don’t know why or how it happens. But through-out this series I will be discussing people who have passed off child abuse and murder as SIDS as well as the people/products which have taken advantage of parents’ fears of, and misinformation about, SIDS– both have set back the research by decades and reinforced centuries old misinformation.
A note about the terminology– SIDS wasn’t SIDS until 1969. There have been multiple names for it, some technical, like SUID and some colloquial like “crib-” or “cot death.” I will try to use SIDS unless quoting or specifically discussing naming of the diagnosis.
Now let’s get to the history.
Most histories of SIDS start with ancient references to overlying or smothering of an infant in bed, in bed with its parent or wet-nurse, for example, you may have heard of King Solomon and the two women who fought over the baby? Well, two women went to sleep in the same room with their babies beside them. One woke to find her baby had died, “And this woman’s child died in the night; because she overlaid it” (1st Kings chapter 3: verse 19; King James version translation). Well she decided to swap her dead baby for the living one.
When the other woman woke up she demanded her baby back and so they ended up in front of Solomon who ordered the baby cut in half so they could share. This was considered the height of shrewdness, because the non-mother was like, “sure, let’s butcher this baby.” While the real mother was duly horrified and said that the other woman could keep her baby just don’t hurt it. — but let’s be real here, the whole issue started because the baby snatcher didn’t want a dead baby, she wanted a living baby. So why would she be chill with killing this stolen baby?
This theme continued throughout (at least the western world) through the European middle ages, where church officials were concerned that families were intentionally smothering their newborns and claiming accidental overlying in order to control the size of their families. So in certain areas, the church forbade families from having the baby sleep with their parents.
Now, this is a situation we will see again and again– was the baby’s death intentional or accidental? One way of dealing with it was to remove the alleged cause of the death: if overlying, then no more co-sleeping or a requirement to use an arcutio (we’ll cover this in more detail in a bit); if it’s the crib bedding, then get rid of crib bedding; if it’s plastic bags, then get rid of plastic bags; if it’s apnea then use a breathing monitor.
I’m foreshadowing like whoa here but the point will be clear that none of this prevented or prevents SIDS– but all of it would act as a criminal deterrent.
So arcutio? What? In the 18th century English translation of the Art of Nursing, or Paedotrophia, they have a diagram of a wood and metal device called an arcutio, or little arch, which was to be placed over the body of an infant while in bed with the mother or wet nurse. The text explains that all wetnurses in Florence have to use one on pain of excommunication. Unfortunately for everyone involved, these devices didn’t prevent SIDS.
I’d also like to point out that beds in history, if not just a hay-stuffed pad or maybe some textiles or furs on the floor, would probably have been a rope-strung mattress of hay maybe, if you’re super fancy, feathers. These beds sag in the middle and that’s why most people slept in a semi-reclined position, now try to throw a newborn into that. After the industrial revolution, beds might have a metal spring base with horse-hair mattress, but it too would divet in the middle, people still tended to sleep semi-reclined propped up on pillows. If you’ve ever bought an antique bed frame and found it too short, it wasn’t just because people were so much shorter, it’s because they weren’t lying flat in the bed. Sleeping safely with an infant in that situation would have been very tricky but the majority of people who could afford beds did.
Even as medicine became more specialized during the early modern era, the idea that sudden deaths of seemingly healthy babies must be caused by overlying or suffocation persisted without really being studied. This is likely due to the relatively high infant mortality rate, infants, even healthy ones, were much more likely to die that an adult (this is why the life expectancy was around 30 years old, not because people expected to die around 30 but because so many under 5’s were dying that it pulled the average life expectancy down) and it wasn’t until the 19th century that laws were passed requiring deaths of infants be recorded and even investigated by a coroner. For example, in Britain Birth and Deaths Registration Act of 1836-7 and the 1887 Coroners Act required coroners to distinguish between natural and unnatural deaths.
In 1893, Charles Templeman published a study of the phenomena in the Edinburgh Medical Journal. After examining 258 cases of “suffocated” infants.
“The usual history obtained is as follows: The child is put to bed in its usual health. When the mother retires, or at some other time during the night, she places the child on one of her arms, and puts it to the breast. At that time nothing unusual is observed. The mother falls asleep with her infant still at the breast and resting on her arm, and in the morning when she awakes she finds it in this position dead.”Charles Templeman, Edinburgh Medical Journal, 1893
Sounds an awful lot like what we would call SIDS. why does he assume overlying if the mother and baby wake up in the same position they went to sleep in?
“The principal causes producing this great mortality from overlaying are, 1. Ignorance and carelessness of mothers; 2, drunkenness; 3, ‘ overcrowding; and, 4, according to some observers, illegitimacy and the insurance of infants.”Charles Templeman, Edinburgh Medical Journal, 1893
Notice that he alludes to these deaths not being accidental in his last cause: illegitimacy and life insurance. He explains that illegitimacy tends to be an issue for poor women, especially those working in mill towns, where the infant is poorly fed and clothed, and generally neglected, which is something difficult for a single mother of the late 19th century to do much about.
However, on the point of life insurance:
“The question of the insurance of children and its effect on infant mortality is one which has lately been receiving a good deal of attention, and some observers are of opinion that it has not a little to do with the frequency of overlaying. […] In the opinion of many of the witnesses examined, especially medical men and coroners, the paltry sum for which their children have been insured has proved too great’ a temptation to some parents, who have by neglect, if not by more direct and speedy measures, sacrificed their children’s lives.”Charles Templeman, Edinburgh Medical Journal, 1893
He suggested that it should be mandatory for infants to sleep separately from their parents– yet separate sleeping spaces was an extreme luxury for most people in late 19th century Britain– and he is well aware of this fact:
“Another important cause is, however, overcrowding. As I have already said, most of these cases occur in one-roomed houses, where frequently father, mother, and two, three, or even as many as five children sleep in one bed, which sometimes consists of a few jute sacks spread out on the floor. Lying on these, with very scanty covering, they “huddle together to keep themselves warm, and in this way the suffocation of an infant, so easily accomplished, is not difficult to explain. This helps to account for the fact that 159, or 62 per cent., of my cases occurred during the winter months.”Charles Templeman, Edinburgh Medical Journal, 1893
But cribs did become more commonplace and as anyone who has heard the term “crib” or “cot death” can guess, putting infants to sleep separate from their parent /siblings did not stop the incidence of sudden infant death.
Just for a moment let’s consider the title of his article: infants who were suffocated. It was 40 years before researchers discovered that suffocation was not a cause of SIDS, however the idea was ancient. But why? I think it has to do with confusing a symptom with the cause. Forgive my crudeness here but when a baby is found dead, it is not breathing. No question about it. But it doesn’t follow that not breathing was the reason the baby died. That’s not a huge rhetorical jump to make, so why has it stuck around so long? Even in the face of evidence to refute it through history, all the steps we took to prevent suffocation of infants while they slept, yet they still died. I don’t have answers to this one but it is something that I have come back to again and again.
Thymic Asthma or status thymico-lymphaticus
Even when researchers rejected suffocation from overlying or bedding, they looked for something else affecting the breathing… perhaps the thymus? What’s a thymus?
It’s a gland, part of the lymphatic system which involves the immune system, it’s a gland that is located under the sternum. Well, back in the 17th century, autopsies were performed of infants who had died mysteriously and they noticed that the thymuses of these babies were huge! Of course, they didn’t think it necessary to record any measurements of these glands, just take their word for it. By 1829 physicians like J.H. Kopp in Heidleberg decided that these sudden deaths were caused by “thymic asthma” in which the thymus was so oversized as to cut off the windpipe and cause the baby to asphyxiate.
It was never really a widespread or popular theory, but its proponents were loud and stubborn. In 1842, Charles A. Lee had the brilliant idea of comparing the size of thymuses of babies who had died suddenly vs healthy babies who had died from trauma. He discovered that the thymuses were the same size and babies just have big thymuses compared to adults– fun fact, by our mid 60’s or so our thymuses will disappear and be replaced with fatty tissue, in a process called involution. (say it with me: “In-Vo-Lu-SHUN”) So for a minute or two thymic asthma was cancelled. But remember what I said about being stubborn….
Well around 1890, Arnold Paltauf reinvented the condition with fancy latin terms, status thymico-lymphaticus which had to do not just with the size of the thymus but ”a complex of bodily changes based upon nutritional and constitutional deficiencies was the cause of sudden death of infants alone in cribs or in beds with parents.”
In 1926, Major Greenwood and HM Wood wrote of Status Thymicus:
“In cases of sudden death, the old inquest verdict of “died by the visitation of God” is at least as scientific and more modest that “Status [Thymicus”] or Lymphaticus”; “Cause unknown” is to be preferred … in certification and in evidence in coroners’ courts … (it is) a good example of the growth of medical mythology. A nucleus of truth is buried beneath a pile of intellectual rubbish, conjecture, base observations and rash generalisation. This heap of rubbish is described in the current scientific jargon and treated as an orthodox shrine (17).”
That same year the Medical Research Council and the Pathological Society of Great Britain and Ireland reported that
“there is no evidence to show that there is any connection between the presence of a large glandular thymus and death from unexpected or trivial causes.”
So we’re done with thymus related theories? Right? Right?
In the 1930’s proponents of the status thymicus were using x-rays to diagnose oversized thymuses ala thymic shadows and then irradiating them.
Yep. Using radiation to destroy the perfectly healthy thymus(es?) of infants and toddlers.
The result: no change for SIDS but the rate of thyroid cancer sure did shoot up in the following decades. Good job guys! By the 1940’s the theory had been thoroughly discredited though I have seen it pop up here and there throughout the middle of the 20th century as a reason for death of an infant.
Okay, we’ve made it to the 20th century and now I’m going to focus in on the United States. Just be aware that there was research being done in many parts of the world on this issue, along with recommendations and laws being passed that they thought would help prevent sudden death.
In the 1930’s (at the same time some doctors were irradiating thymuses for no damn reason) a group of researchers looked into whether suffocation could conclusively be said to be the cause of SIDS deaths… and to their surprise, it wasn’t. At all. Of course with all apparent major breakthroughs, more research was needed.
In 1947, husband and wife team, Jacob Werne a medical examiner for New York City and Irene Garrow a pathologist at St. John’s Long Island City and Flushing Hospitals published their findings showing that suffocation should not be assumed as a cause of death and recommended that the American Public Health Association “appoint a commission consisting of pediatricians, pathologists, and health officers for the comprehensive study of this important problem of sudden death during infancy.” In short, they wanted the government to step in to help with this research.
One of the biggest hurdles to research (aside from funding and interest) was the stigma around crib death. By admitting that your baby died from crib death you’ve admitted to the world that you were unfit as a parent in some way (of course this isn’t true, but it’s how a lot of people felt at the time, certainly how most parents felt and feel if they experienced this tragedy). Family doctors didn’t help the situation when they, not wanting to cause more suffering for grieving parents, often wouldn’t even record the death as crib death, opting instead for an uncontroversial cause of death like pneumonia, and parents, knowing their baby hadn’t been ill would see this and be reinforced in their shame.
Even for parents who knew that the death wasn’t their fault, such as the father who wrote the article, “Death in a Bassinet” for the February 1949 edition of Woman’s Home Companion, chose to remain anonymous. This father paid for a private investigation into the cause of crib death and noted that the majority of the babies who died were sleeping on their stomachs. Today, most of us are aware of the Back to Sleep program instituted in the 1990’s, its widely credited with a reduction of SIDS, however, I hope I am making it clear that there is nothing that will prevent SIDS. Babies have died from SIDS while sleeping on their backs and the stats on infant sleeping position at death from SIDS bares this out throughout the decades. And briefly, in the 1980’s, putting baby to sleep on their stomachs was recommended to prevent them choking on fluids as having their faces down or to the side would allow spit-up, snot, or salvia to run away from the airways– similar to the recommendations for your passed-out drunk friend.
So why this association with stomach sleeping and crib death even at this early date?
Because the majority of babies were placed on their stomach to sleep. Most babies do sleep better on their tummies. They have more brown fat, insulating fat, on their backs so they are warmer in that position; it could also be because spit up and other fluids fall away from their faces; it could be spinal development and the weight of their legs make sleeping on their backs less comfortable, and/or it could be that startles are less pronounced and less likely to wake the baby while they are on their tummies, or all of the above.
And this better sleeping from being on their tummies has been offered as a reason for associating tummy sleeping with SIDS: maybe they are sleeping too heavily and they forget to breath (again, a focus on the breathing) and it has also been noted that in cultures that continue a tradition of co-sleeping (usually with the person breastfeeding the baby) that babies are placed on their back to sleep so they can access the breast, and in those cultures there is a lower incidence of SIDS (at least officially reported cases identified as SIDS, and we’ve already seen how correct diagnosis on death certificates is a problem).
However, during the decades that western researchers became focused on solving SIDS, nearly all babies were being put to sleep alone, in cribs, on their tummies so it’s not really surprising that the small percentage of infants who were dying of SIDS would be on their tummies at the time of death. So the recommendations of putting babies on their backs to sleep is a bit like the recommendation from a few generations prior when the advice was to put babies to sleep alone in cribs when SIDS (well overlying) was being associated with bedsharing.
The first “SIDS” conference was held in November of 1949 and was organized by Katherine Bain, a pediatrician with the Children’s Bureau who got funding through the National Institutes of Health. A major discussion point was the issue of doctors and coroners (elected officials not necessarily having any medical background) not knowing about the new research (some of them still putting down “status thymicus” on death certificates or believing that sudden infant death was caused by suffocation). In addition, they wanted to do more research, with more subjects from all over the country in a streamlined, consistent way to find out what was causing these deaths if not suffocation.
Dr. Ferber (yup, that Dr. Ferber) suggested a national study, alerting all coroners of the need for a careful autopsy by a well-trained pathologist for all sudden infant death victims– but the idea was quickly scrapped due to budget and technical constraints. Instead they organized a few studies in larger metropolitan centers that would have the money, the professionals, and the facilities available. These studies, which included 126 infants, demonstrated that crib death was not caused by suffocation but that there was evidence of some kind of inflammatory process in the respiratory track in some of the infants who died. Following this, there was a five year study trying to pin down a viral cause of the respiratory inflammation but it was inconclusive.
As to the issue of educating doctors and parents; a badly titled paper was published in the Journal of American Medical Association in 1950, “Infant Deaths from Suffocation”. For parents, particularly mothers, articles were published in popular magazines including, The Child (1950), and in 1952, Today’s Health ran “Babies Rarely Smother”, and in McCalls the published “Babies Don’t Smother”. All of the articles told parents to relax about accidental suffocation and to be on the lookout for cold symptoms– and for parents whose infant dies from crib death, to request an autopsy. — I’m trying to get a copy of these articles– if you have access to one of the archives or know a magazine collector who’d send me some photos/scans, please let me know!
The plan seemed to be working, medical textbooks show the evolution of understanding,
- 1942: “asphyxia from overlying” as 1st in a long list of possible causes of sudden infant death, and they rejected the idea that the deaths were caused by enlargement or dysfunction of the thymus. (Griffith and Mitchell, 1942: 142)
- 1945, 1950, 1954: suffocation dropped to 4th place, “many deaths have been falsely attributed to suffocation resulting from entanglement in bedclothes” but that it was a “rare occurrence” whose “importance has been greatly over emphasized” (Nelson, 1945: 209, 1950:374, 1954:299)
- 1959: suffocation dropped to last of six possible causes, “evidence of suffocation was ‘difficult or impossible to obtain;’ unless there was ‘unequivocal’ evidence of homicide or strangulation, death should not be attributed to suffocation nor should such a diagnosis be made ‘simply because an infant is found face down in bed;’ and finally, ‘in the absence of irrefutable evidence to the contrary, the family should be made to understand that they were in no manner responsible for the death of their child’ (Nelson, 1959:350)
And it’s that last point that becomes the major theme of SIDS advocacy over the next few decades.
During the 1960’s a number of parent-run SIDS Advocacy Groups sprang up across the US, their goals were to help parents learn about sudden infant death and that it wasn’t their fault– and to raise money for research efforts.
Sylvia and Saul Goldberg of Maryland lost their baby Suzanne to SIDS during a nap in her baby carriage outside in 1963. They established the first formally organized parent advocacy group, which they called The Guild for Infant Survival (nov 1964)– (changing its name to the International Guild for Infant Survival in 1971) “Conquer Crib Death” became their mission.
The Roe family of Connecticut established “Mark Addison Roe Foundation” 1965, named after the son they lost to crib death (the name was changed to the “National Foundation for Sudden Infant Death (NFSID) in 1967). When Mark died the police began a homicide investigation, asking the father if his wife loved their son.
Fred Dore was a senator from Washington state who had lost a daughter to crib death,– and her death certificate had “acute pneumonitis” as a cause instead of sudden death because of that good old stigma. When he contacted the state coroner to see what needed to be done to get more research, he learned that the state coroner had also lost a baby to crib death. Fred helped push for legislation at the state level to get funding for research (researchers literally needed help funding just for transportation of the infants’ bodies for autopsy) and on March 11, 1963 ‘passage of the first state law in the United States requiring an autopsy of all children under 3 who died suddenly and apparently in good health.’ And with funds from National Institute of Child Health and Human Development (NICHD) The Dore family helped organize another research conference on crib death in Seattle 1963.
Child Abuse as Public Health Issue
But before we go to the conference, there’s another plotline occurring at this time: child abuse had started to become a public health issue. People had always been generally aware of the problem but they thought that problem was a private family issue, but now research was coming to light that the consequences for society of not preventing child abuse were grim. In 1962, C. Henry Kemp published “The Battered Child Syndrome” and forensic pathologists, like New York City Chief Medical Examiner, Dr. Milton Helpern, who’d seen the results of child abuse on his autopsy table were advocating for what would eventually become the mandatory child abuse reporting laws in the 1970’s. The issue they were seeing across the country, especially in smaller towns, was that the doctors felt social pressure to not interfere in cases of suspicious injuries or explanations of accidents that didn’t match the injuries. If there was an automatic requirement for all suspicious injuries to be investigated and all suspected child abuse to be reported, it took the social pressure off individual doctors. And he wanted a similar program for infant and child deaths.
Random History: Plastic Baggies
In 1959, after a steep rise in rates of infant suffocation by plastic baggies– this crazy new product apparently being used to cover the mattresses and pillows in infant cribs– Dr. Helpern invited the heads of the plastics industry to a meeting to discuss what could be done about this. The heads of the plastics industry, perhaps still believing that crib death was associated with suffocation, denied that their products were killing infants, rather these deaths were attributed to crib death. Of course, Dr. Helpern had his own theories, he told his colleagues that these plastic baggy deaths should be treated as homicides until proven otherwise.
Dr. Helpern did a lecture in 1969 on The Battered Child, his first case study was that of a newborn baby whose parents had claimed to find him dead in the morning, typical case of sudden infant death, the baby looked healthy with no visible injuries, however during autopsy they soon found multiple skull fractures. This was an example he gave of why it was so important that all cases of infant and child deaths be thoroughly investigated by a forensic pathologist– just in case there was evidence of foul play. And Dr. Helpern wasn’t alone, Lester Adelson, a SIDS researcher who believed that sudden infant death was caused by infection rather than suffocation, published an article in 1961 called “The Slaughter of Innocents” in the New England Journal of Medicine, “it was a study of 46 probable homicides of babies and small children, going back to 1944, that he had found in the files of the Cuyahoga county coroner’s office.” And thanks to new surveillance technology, doctors had evidence of parents intentionally smothering infants who were in the hospital due to alleged breathing troubles they’d experienced at home. In point of fact, some parents were intentionally killing their children and claiming it as a SIDS death.
With child abuse becoming this social evil that needed to be cast out, the concern for the SIDS parent advocacy groups was that all parents of SIDS victims would automatically be suspected of murder. They started to get defensive. And it hurt their cause. All the SIDS researchers wanted universal autopsies of SIDS victims so they could get a better picture of the issue, find patterns, etc. But because autopsies were being advocated for by the people who suspected abuse or murder in every case the parents’ groups didn’t want to comply.
And it wasn’t just the issue of death investigations that made them defensive. For example, the Goldbergs’ invited one of the biggest names in crib death research, Dr. Molly Dapena, to present to their group in Baltimore. When she presented epidemiological data that showed the SIDS rates were higher in lower income regions, they told her off, claiming to have been deeply offended by her inference (i.e. they might be, egads! like poor people!)
So let’s talk about the 1963 SIDS Conference in Seattle, which had come to be known as the America’s crib death capital (though I suspect it was from more consistent reporting, but I could be wrong)– in the book, Death of Innocents, the authors explained,
“the Seattle conference would become the Genesis of a movement whose goal was not only to discover the cause and prevention of crib death, but to establish crib death as a legitimate a medical entity, thereby shifting guilt, and certainly suspicion, away from the parents who are also victims, and placing the burden of discovery on medical science.” (193)The Death of Innocents, p193
This medical entity was dubbed Sudden Death Syndrome, SDS, by Benjamin H Landing, with emphasis on the word syndrome to “imply the existence of a constellation of properties in the patient which need not have the same cause.” SDS wasn’t a disease process and the resulting death was unlikely to have a single cause.
The attendees of this conference were aware of the data showing that SDS disproportionately affected those of lower socioeconomic classes and
- Primarily under age 6 months, uncommon after age 2
- Recurrence within families with rare
- Homes of smokers
- Less or no prenatal care
- “Poor Mothering” (judgement on nurturance or economics or both?)
- Routine infections were often associated
- Is not caused by smothering or suffocation
Some of the theories for the cause of SDS discussed at this conference included:
- The common cold- babies breathe through their nose so a stuffy nose could cause a problem with breathing
- Severe respiratory infection
- Something to do with respiration, airway blockage (even though suffocation had been ruled out decades before?)
- Cow’s milk hypersensitivity causing fatal shock
- Choking on regurgitated formula
- Low levels of gamma globulin, antibody proteins in the blood plasma
- Electrolyte disorders
Dr. Marie Valdes-Dapena a pediatric pathologist, who herself had 11 children in 16 years! was on her way to becoming “the doyenne of SIDS research”, in fact through her work she refuted many of the above theories for SIDS, including the gamma globulin theory. At this conference she presented on the case of Martha Moore (which is a pseudonym for Marie Noe) who had lost 7 babies to alleged SIDS since 1950 and had been featured in Life Magazine as she was pregnant with her 8th child. Everyone at the conference understood that multiple SIDS cases in a single family was fleetingly rare, so 7 was suspicious to say the least but already it was becoming non-pc to suggest infantcide.
The conference was also attended by leading SIDS researchers like Abraham Bergman. Bergman was involved in “political medicine”, he spearheaded the Flammable Fabrics Act Amendments and the Poison Prevention Packaging Act. His research showed that sudden infant death didn’t seem to occur to the newest newborns but to 2-4 month old infants. He was an advocate of the parent activists and fervently opposed to death investigations for cribs deaths because it seemed to put blame on parents who, in his opinion, were never to blame (i.e. that no parent intentionally smothers their infant and claims otherwise).
And his colleague J. Bruce Beckworth, a pediatric pathologist, agreed with that assessment, believing that pathologists like Dr. Helpern thought only doctors’ babies experienced sudden death and all others were homicides. In his research he noted that stomach sleeping was common to crib death babies. And he noticed that in autopsies of SDSs babies that there was petechiae spread over the surface of the chest organs and he thought this was caused by an obstruction of the airway that disappeared after death, such as a laryngeal spasm. This laryngeal spasm theory was effectively the thymus theory reborn but without irradiation.
Warren Guntheroth, pediatric cardiologist, proposed respiratory abnormality: “He believed that the normal respiratory center, which slows during sleep, might be pathologically depressed in some newborns, putting them at risk for death. All babies had apnea; maybe some simply never emerged from these episodes.” And he suggested that using breathing monitors, small portable home monitors but many of the other people at the conference including Bergman did not like this idea, because it gave the impression that patients could do something to prevent SIDS, when at the present there was no evidence that they could. Therefore if a baby dies it’s their fault. In the Death of Innocents they explained, “While Bergman thought there was merit in a theory that respiratory abnormality was a factor in SIDS, a monitor took the idea way beyond the available science, while setting parents up for more than the usual guilt.” And the suggestion of breathing monitors struck other researches as irresponsible, an invitation to medical profiteers.
1969 SIDS Conference
The 1963 conference was a good start with many promising research leads to follow, so Bergman and Beckwith planned another SIDS conference for 1969, this time on an island in the Puget Sound. In Death of Innocents they say that his goals for the 1969 conference were political and financial “[Bergman] saw sudden infant death as, literally, political science; the way to attack the science was to first do politics: to raise consciousness, and then money. Support had to come from the federal government, and the fires of Inquisition had to be lit under some of the nation’s better scientists.” 198-9
They invited some of the biggest fundraisers for SIDS research of the time, including Mary Dore and the Goldbergs. Speaking of the Goldbergs, Slyvia had been on the Today Show in 1968, interviewed by Barbara Walters, Life Magazine came to take pictures of their home, she was interviewed for Ladies Home Journal, and in 1969, their International Guild for Infant Survival was opening new chapters in Africa and India. The Roes had by this time sold their foundation to friends who ran a marketing firm.
Beckwith also decided that he didn’t like the name used since ‘63, Sudden Death Syndrome, since the initials were the same as a militant student group, so he proposed Sudden Infant Death Syndrome or SIDS and a definition of it, “the sudden death of any infant or young child, which is unexpected by history, and in which a thorough post-mortem examination fails to demonstrate an adequate cause of death.” 200
Martha Moore/ Marie Noe
Again, Dapena presented on the Marie Noe case, she had now lost 10 babies to alleged SIDS, and even though Newsweek magazine at the time assured the readers that this wasn’t a case of serial infantcide, yet “Dr. Joseph Spelman, the chief medical examiner of the city of Philadelphia, has concluded that these children did not die of SIDS, she announced however, because of legal implications, we are not at liberty to report the results of his investigation.” After presenting this revelation her colleagues responded with uncomfortable silence and blank stares.
Questioning any parent who claims their baby died from SIDS was now a taboo even in research circles. And I have to wonder if it’s not something to do with the fact that many of the researchers, especially the more politically active ones (i.e. ultimately trying to get federal funding) felt they had to appease people like the Goldbergs who would become deeply offended by any research they felt reflected poorly on their lifestyle, let alone any research that suggested some parents were using SIDS to cover for a crime as heinous as infantcide– even if that was the fact of the matter.
As it turned out, the Philadelphia police suspected the Noes of killing their children one after another for insurance money, but they were in a legal battle over whether they could try the case without physical evidence.
And Dapena wasn’t a lone voice on bring attention to the issue of infantcide in a small percentage of deaths attributed to SIDS: Stuart Asch, New York psychiatrist, published a paper in 1968 “proposing that a specific version of infant side – murder at the hands of mothers consumed by extreme cases of postpartum depression – was an unrecognized cause of some sudden infant deaths.” He didn’t want mothers prosecuted, he wanted better screening and treatment to prevent such tragedies… but it was the 1960’s.
The Man with all the Answers
Bergman had also invited a 39 year-old pediatric researcher from Syracuse with no background in crib death, Dr. Alfred Steinschneider, he was the 15th of 16 presenters. He had a phd in psychology + MD. Abe Bergman had invited him because it was said that SS had a great head for numbers and statistics. He had published 24 papers on the infant nervous system, specializing in the autonomic (involuntary) nervous system. His research on apnea focused on premature babies who tend to have more apnea than term babies.
In his presentation, without any supporting evidence (because he had no background in SIDS save the few days at the conference), he declared that he had solved SIDS: cardiac and respiratory abnormalities were the cause of SIDS and a concentrated research effort should be focused on his theory.
Dr. Dwain Walcher, “the godfather of SIDS research” didn’t like the tone of Stienschnieders presentation, especially the suggestion that everyone who had actually been researching SIDS for years or decades drop everything to focus on his theory. Stienschnieder didn’t seem to understand how research worked, how to work with other scientists. In fact, it was as though he hadn’t listened to or cared about all the other presentations before his own. Walcher challenged Stienschnieder by asking if any baby that he studied with apneic spells had actually gone on to die from SIDS. –He hadn’t.
Guntheroth, who had suggested a similar theory at the ‘63 conference with a recommendation for breathing monitors, stood up for Stienschnieder by mentioning that he knew of two babies who had apneic episodes at home and were resuscitated, and then died a few days later from SIDS. Another attendee spoke up, explaining that having apnea wasn’t the point here, because apneic breathing was normal for infants, especially preemies.
What Guntheroth had described, this apnea at home followed by resuscitation, was being called “near miss” episode, or near miss SIDS and some believed that it might be linked to SIDS because there were many examples of infants who had these episodes that went on to die from what appeared to be SIDS within days or weeks. But not all agreed with this, their suspicion was of intentional smothering and resuscitation followed by homicide, but they dare not suggest it.
There was a difficult tension between the parent groups and legitimate scientists. Many of the parents in these groups only wanted to hear good news and research that reflected well on them, they didn’t necessarily want the facts.
The facts are that SIDS is a complex issue, there aren’t quick answers or simple solutions. Legitimate researchers shouldn’t play politics and they shouldn’t lie or dissemble the truth to appease the fundraisers or sway politicians, or inflate their ego.
But parents wanted answers, after all, they had worked hard to raise money for this research, for these conferences, now where were their results? This understandable frustration made them vulnerable to the first quack who claimed to have a simple answer to a complex problem.
And with that I leave you until next time when we meet Mrs. H and see how Stienschnieder’s research gets on as SIDS activism heads to Washington.
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Cohen, Marta C., Irene B. Scheimberg, J. Bruce Beckwith, and Fern R. Hauck. 2019. “Investigation of Sudden Infant Death Syndrome.” Diagnostic Pediatric Pathology. Cambridge University Press.
Diamond, Eugene. 2012. Sudden Infant Death or Infantcide?: An Unresolved Mystery. AuthorHouse (self published)
Firstman, Richard and Jamie Talan. 1997. The Death of Innocents: A true story of murder, medicine, and high-stakes science. New York: Bantam Books.
Gurbutt, Dawne J. 2007. Sudden Infant Death Syndrome: Learning from Stories about SIDS, Motherhood and Loss. Oxford: Radcliffe Publishing.
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Valdés-Dapena, Marie A. 1978. “Sudden Unexplained Infant Death, 1970 Through 1975: An Evolution in Understanding.” US Dept of Health, Education, and Welfare. (Available free on Google Books.)
Wright Jr, James R. 2017. “A Fresh Look at the History of SIDS.” Academic Forensic Pathology International. 7(2): 146-7.
Book and Baby Historian, frolicking through archives. Panics when low on chocolate rations. Will embarrass self in any social situation to point out or pet other people's dogs. Habitual stumbler, peppermint tea drinker. People watcher, pizza slayer.