The SARS-CoV-2 pandemic has resulted in millions of deaths worldwide and a wide variety of adverse health outcomes ranging from mild inconveniences to serious acute and chronic complications. In the pediatric population, death is a concern but thankfully has been relatively uncommon. But many children, particularly those that are not white and wealthy, have faced severe health challenges.
Earlier this month, freshly reported CDC data on sudden and unexpected infant deaths (SUID) from 2020 was analyzed and published in Pediatrics. The findings raise the question that an increase in certain causes of infant death might be yet another sequela of this grossly mishandled pandemic. And, as I’ll explain shortly, once again it appears that communities of color are bearing the brunt of coronavirus related misfortune.
I last wrote about CDC data on SUID data back in May of 2021. In that post, I discussed SUID, SIDS, accidental suffocation and strangulation in bed (ASSB), as well as the history of our tracking and response to these outcomes in detail, so please check it out. At the time, a study breaking down newly released CDC numbers had revealed that we still had a long way to go when it came to education of families on modifiable risk factors contributing to these preventable deaths.
In that 2021 paper, also published in the flagship journal of the AAP, researchers looked at CDC data from 2011 to 2017 using an improved systematic approach that avoided most of the confusion inherent in historical reporting of SUID cases. They found that 72% of cases were associated with unsafe sleep practices. Clearly, as I summarized in my conclusion to the post, our approach to preventing these tragic outcomes was failing our patients and their families:
After analyzing the data, the authors determined key implications for pediatric healthcare professionals. Because more than 70% of SUID cases involved unsafe sleep environments, it is crucial that we figure out why caregivers aren’t following our recommendations. It is imperative that we develop more effective ways to educate caregivers and to help them adhere to guidelines. One potential way to improve adherence and to save infant lives would be to determine high risk groups and target our educational outreach.”
In the new study looking at CDC SUID data from 2015 to 2020, researchers discovered an unsettling increase in cases designated as sudden infant death syndrome (SIDS), which is a subcategory of SUID. This was the first increase in this cause of death in 5 years, and it occurred in a year that saw a record low overall infant mortality rate in the United States. There could be an explanation other than a true increase in cases, but as you’ll see shortly I’m skeptical, and questions remain that will only be answered by more detailed data over the next few years.
In 2020, 542 infant deaths per 100,000 live births occurred, a record low in the United States. That same year, however, the overall rate of SIDS specifically was 15% higher than in 2019, with 38.2 deaths per 100,000 live births. The total SUID rate per 100,000 live births was also higher, increasing from 89.5 to 92.1 in 2020, but this wasn’t a statistically significant increase. There is, of course, more to the story.
SUID rates have always been considerably higher in Black and Native American populations, and this trend continued in 2020 with rates of 214 and 205.1 per 100,000 live births respectively. To put this in perspective, SUID in White babies occurred at a rate of 75.6 per 100,000 live births in 2020. Hispanic and non-Hispanic Asian infants historically have had even lower rates, and this didn’t change in 2020. The rate of SUID in the latter group was only 23.3 per 100,000 live births, which is higher than zero, so too high, but still remarkably low in comparison.
What really stood out in the 2020 numbers was that every group had SUID rates that were either lower or stable except for Black infants. This group saw an increase of 11%, from 189.9 to 214 cases per 100,000 live births. So if the increase in SIDS cases is real, and I think it is, it isn’t a stretch to imagine that most of those additional deaths involved Black infants.
What could have been behind the increase in SIDS cases, and the increase in SUID in Black infants in 2020? There isn’t any proven explanation, but honestly this seems pretty obvious to me. Maybe not as obvious as the relationship between parachutes and skydiving survival, but I don’t think it’s that much of a mystery really.
First off, the authors state quite correctly that these increases were not caused directly by infection with SARS-CoV-2. That would have been easy to pick up on. Considerably more plausible is that it was an indirect effect of COVID-19 as it swept across the country in 2020, and the subsequent measures put into place in order to reduce its spread, both of which were more likely to cause severe disruptions in communities of color.
The ultimate cause is almost certainly multifactorial, involving increased financial stress and decreased access to prenatal and pediatric care as well as safety-net support programs like WIC and Healthy Start. During these encounters, caregivers of young infants will often receive education on safe sleep. There are numerous additional potential variables that could have resulted in families being less likely to adhere to recommendations aimed at reducing the risk of SUID. For example, perhaps some families were more likely to bedshare, or less likely to place a baby to sleep on their backs, because of significant psychological stress related to unemployment or being evicted from a stable home. Childcare upheaval resulting in adults or even older children needing to assume caregiver duties might also have played a role in some of these deaths.
The authors of the study point out that a potential factor in the increase in reported SIDS cases was diagnostic substitution. There were new guidelines for certification and reporting of SUID cases published by the National Association of Medical Examiners and the Radcliffe Congress in 2019 that could have increased the likelihood of designating a death as SIDS rather than ASSB. But, as they also point out in the paper, it is unlikely that any new guidelines would have been adopted widely enough to make a difference that quickly. Also, and I’m surprised that the authors did not mention this, there was not a corresponding decrease in ASSB cases in 2020.
Diagnostic substitution would also not explain an increase in unexpected deaths only in Black infants. But maybe this data is just noise, or a statistical fluke. Maybe more data over the next few years will demonstrate a regression to the mean and even a return to the steady decline in SIDS cases we had been experiencing. I certainly hope so.
In the meantime, there is simply no good reason not to focus on social determinants of health, and the significant disparities in care, as the primary causal factors. As the study authors state, it has been abundantly clear since the beginning that the pandemic has impacted communities of color, including infants, more severely for a number of key reasons:
Factors exacerbated by the COVID-19 pandemic and related stay-at-home orders (eg, access to health care, changes to or loss of childcare, parental or caregiver financial and emotional stressors, and increased parental or caregiver substance use) may have also influenced the increased SUID rate among non-Hispanic Black infants in 2020.
Though I’m sadly not very optimistic at this point, we need to better acknowledge how these negative social determinants of health are unfairly clustered in certain groups. And we need to better recognize the generational harm that can occur, increased SUID rates being only one example. Armed with a better understanding, efforts should be focused on reaching these groups with targeted education on how to make infant sleep as safe as possible and to “support, follow-up, and follow-through with families.”