Last year, I had the opportunity to present at the 3rd Annual SIDS Summit organized by Dr. Jan-Marino (Nino) Ramirez, the Director of the Center for Integrative Brain Research at Seattle Children's Hospital, and John Kahan, the Chief Data Analytics Officer at Microsoft and the president of Aaron Matthew SIDS Research Guild of Seattle Children's Hospital. The mission of the Aaron Matthew SIDS Research is to ensure that no parent experiences the loss of a child as a result of sudden infant death syndrome (SIDS).
SIDS is the sudden and unexplained death of an infant younger than age 1 year. It is the leading cause of death among infants age 1 month to age 1 year in the United States.1 There has been little to no improvement in the rate of death since the mid-1990s. SIDS strikes without warning and leaves few clues about its cause.
The SIDS Summit invited investigators, clinicians, and data scientists to provide updates on progress in SIDS and to brainstorm about ways to further the progress in research and epidemiology. Because I have been active in the study of one small subsection of infants—those who die in the first 7 days of postnatal life secondary to sudden unexpected postnatal collapse (SUPC) or also called sudden unexpected neonatal death—I presented the SUPC Quality Safety Initiative to the group.1 The goal with the safety initiative project is to prevent SUPC as outlined recently.2
This SIDS Summit centered around a 5-point approach through which this group tackled (1) epidemiology, (2) pathology, (3) physiology, (4) genetics, and (5) behavioral change. The organizers of the Summit believe that an integrative and collaborative approach is critical to making progress in eliminating SIDS and sudden unexpected infant death (SUID).
To this end, a team of professional Microsoft data scientists are jointly working with some of the top investigators in the field, including Dr. Edwin Mitchell (University of Auckland), Dr. Rachel Moon (University of Virginia Medical School), and Dr. Richard Goldstein (Boston Children's Hospital). Dr. Mitchell's prior work in SIDS reduction measures, including placing infants on their backs, has helped to lead the successful Back to Sleep program (now called Safe to Sleep) in the US and similar initiatives throughout the world.3 Dr. Moon contributes to the latest safe sleep recommendations that are published by the American Academy of Pediatrics.4 Dr. Goldstein is an active SIDS/SUID researcher, with a focus on genetics as well as the founder of Robert's Program (a service for families who have lost their children suddenly and unexpectedly) at Boston Children's Hospital.
The presentations from the data scientists encompassed a broad array of epidemiological factors associated with early sudden death including day of the week, time of day, geographic variation, prenatal care, and factors associated with late stillbirth. The main data source is the birth cohort linked to the birth-infant death dataset, which records every live birth in the US, made available by the Centers for Disease Control and Prevention. Routine analyses include tens of millions of births and tens of thousands of SUID deaths.5
Up until now, one of the major limitations of SIDS/SUID research has been small and regionally specific datasets. Being able to analyze huge datasets takes a special set of skills and computational power that was not possible a decade ago. Combining the computational know-how with researchers' skills, including familiarity with the gaps in the literature and being able to disseminate the insights through journals aimed at health professionals, has been a recipe for success. A well-received recent example in the literature pipeline is the article by Anderson et al.6
Seattle Children's Hospital, in association with Microsoft, has launched a genetic database for cases of SIDS, SUID, or sudden unexpected death in childhood (SUDC) up to age 5 years. They are collecting tissue samples (preferably fresh-frozen at −80°C) and obtaining next generation whole genome sequencing data from each sample.5 Every base pair in the entire genome is sequenced and will be stored in the database. Professional geneticists, bioinformaticians, and data scientists will then be able to use sophisticated analytic techniques to analyze these massive datasets and try to find candidate genes that could help explain these unexplained deaths. The eventual hope is that newborns will routinely be genetically screened at birth and if certain genes are detected, extra precautionary measures can be implemented. The team at Seattle Children's is working with several collaborators to obtain past samples but are also running a research study ( https://givetostopsids.org/ResearchStudy) to collect new samples.
This group at Seattle Children's has partnered with Cribs for Kids ( cribsforkids.org), which helps educate parents, caretakers, and grandparents (and health care professionals, too!) about the safe sleep environment for infants and provides safe portable sleep cribs/bassinets for families who cannot afford them. To a small degree, I have been involved with the efforts at The University of Chicago in collaboration with Cribs for Kids working toward gold certification, which has involved a comprehensive effort to update the University's safe sleep policies throughout the Comer Children's Hospital, including the mother-baby unit and the neonatal intensive care unit. Melissa Benesh, MSN, and Jill Krause, MSN, are working with staff to model safe sleep behavior for caretakers as well as teaching pediatric providers. One barrier, identified by Melissa, is what one parent said to her: “Haven't you heard about crib death? I am not going to put my baby in a crib.” A common struggle among health care professionals interfacing with new parents is to provide quality safe sleep education that overrides powerful myths and misinformation that are often shared by well-meaning loved ones or on social media. In the case of Melissa's patient, the mother had a misunderstanding of the meaning of “crib death.” Cribs for Kids works to teach about the SIDS risk factors and explain the importance of putting infants/babies to sleep on their backs on a firm surface without bumpers, extra blankets, and toys in the crib, bassinet, or portable sleep units. The certification process is rigorous.
- American SIDS Institute. Definitions: SIDS. https://sids.org/what-is-sidssuid/definitions/. Accessed December 16, 2019.
- Garofalo N, Pellerite M, Goodstein M, Paul D, Hageman JR. Sudden unexpected post-natal collapse: one newborn death is one too many. Part 2: quality initiatives. Neonatol Today. 2019;14(3):4–6.
- Task Force on Sudden Infant Death Syndrome. SIDS and other sleep-related infant deaths: updated 2016 recommendations for a safe infant sleeping environment. Pediatrics. 2016;138(5):e20162938. https://doi.org/10.1542/peds.2016-2938 doi:10.1542/peds.2016-2938 [CrossRef]27940804
- Moon RYTask Force on Sudden Infant Death Syndrome. SIDS and other sleep-related infant deaths: evidence base for 2016 updated recommendations for a safe infant sleeping environment. Pediatrics. 2016;138(5):e20162940. https://doi.org/10.1542/peds.2016-2940 doi:10.1542/peds.2016-2940 [CrossRef]27940805
- Lavista Ferres JM, Anderson TM, Johnston R, et al. Distinct populations of sudden unexpected infant death based on age. Pediatrics. 2020;145(1):e20191637. https://doi.org/10.1542/peds.2019-1637 doi:10.1542/peds.2019-1637 [CrossRef]
- Anderson TM, Lavista Ferres JM, Ren SY, et al. Maternal smoking before and during pregnancy and the risk of sudden unexpected infant death. Pediatrics. 2019;143(4):e20183325. doi:10.1542/peds.2018-3325 [CrossRef]30858347