A new study that aimed to better understand sudden unexpected deaths in young children, which usually occur during sleep, has identified brief seizures, accompanied by muscle spasms, as a potential cause.
Experts estimate that in the United States, over 3,000 families lose a baby or toddler unexpectedly and without explanation each year. Most of the cases involve infants suffering from sudden infant death syndrome (SIDS), but in 400 or more cases, children over the age of one are affected, leading to sudden unexplained death in children (SUDC). More than half of these children are toddlers.
The study results are from a registry of over 300 SUDC cases, established a decade ago by researchers at NYU Grossman School of Medicine. The researchers used a comprehensive analysis of medical records and video evidence donated by families to document the unexplained death of seven toddlers aged between one and three, which may have been due to seizures. The seizures lasted for less than 60 seconds and occurred within 30 minutes immediately before each child’s death, according to the study authors.
The findings were published online in the journal Neurology on January 4th. The study involved an analysis of rare SUDC cases by a team of eight physicians, for whom there were home video recordings from security systems or commercial nursery cameras made while each child slept overnight or in the afternoon of their death.
Five of the seven recordings ran continuously at the time and showed direct sounds and visible movements suggestive of a seizure. The remaining two recordings were triggered by sounds or movements, but only one indicated the occurrence of a muscle spasm, a sign of a seizure. Additionally, only one toddler had a documented history of febrile seizures. All children in the study had previously undergone an autopsy, which failed to determine a definitive cause of death.
„Although our study is small, it provides the first direct evidence that seizures could be responsible for some sudden deaths in children that typically go unnoticed during sleep.“
Laura Gould, lead author, assistant professor of neurology at NYU Langone
Gould lost her daughter Maria at the age of 15 months in 1997 to SUDC, a tragedy that led her to successfully advocate for the establishment of the NYU SUDC Registry and Research Collaborative. Gould emphasizes that death investigations would not have indicated a seizure without the videotape evidence.
„These study findings show that seizures occur much more frequently than the patients‘ medical history would suggest, and further research is needed to determine if seizures commonly occur in sleep-related deaths in toddlers and potentially in infants, older children, and adults,“ Laura Gould stated.
Orrin Devinsky, MD, the lead senior investigator and neurologist, adds that „seizures may be the ’smoking gun‘ that medical science has been looking for to understand why children die.“
„Investigating this phenomenon could also provide valuable insights into many other deaths, including those caused by SIDS and epilepsy,“ said Devinsky, who co-founded the SUDC Registry and Research Collaborative at NYU Langone with Gould.
Further investigation is necessary to precisely determine how seizures with or without fever can lead to sudden death. Previous studies on epilepsy patients have indicated breathing difficulties known to occur immediately after a seizure, which can lead to death. This was found to occur more often in epilepsy patients, as well as in the children involved in the study, when they were sleeping face down on their stomach without anyone witnessing the death.
According to Devinsky, continuous monitoring of childhood deaths and improvements in medical records are required to track how often these seizure-related deaths precede death. Seizure-related deaths are rarely reported in individuals with and without epilepsy.
For the study, forensic pathology, neurology, and sleep medicine experts analyzed each video recording for quality, sound, and movement. From this, they were able to determine in which toddlers muscle spasms occurred as a sign of seizures before their death and when. Access to the videos was and is strictly limited to the researchers involved in the study.
The financial support for this study was provided by SUDC UK, FACES at NYU Langone Health, and the SUDC Foundation. Additional financial support was provided by the National Center for Advancing Translational Sciences and the National Institutes of Health grant UL1TR001445.
In addition to Gould and Devinsky, other NYU Langone researchers involved in this study include Codi-Ann Reid, BS; and Alcibiades Rodriguez, MD. Co-investigators of the SUDC Video Study Group include Dr. Alison Krywanczyk from the Cuyahoga County Medical Examiner’s Office in Cleveland; Kristen Landi, MD, at the New York City Office of the Chief Medical Examiner; Melissa Guzzetta, DO, at the Middlesex County Medical Examiner’s Office in NJ; Heather Jarrell, MD, at the Office of the Medical Investigator, University of New Mexico, in Albuquerque; Kelly Lear, MD, at the Arapahoe County Coroner’s Office in Centennial, Colorado; Tara Mahar, MD, and Katherine Maloney, MD, at the Erie County Medical Examiner’s Office in Buffalo, NY; Declan McGuone, MBBCh, at Yale University in New Haven, Connecticut; Alex Williamson, MD, at the Zucker School of Medicine at Hofstra/Northwell in Hempstead, NY; Katheryn Pinneri, MD, from the Montgomery County Forensic Service in Conroe, Texas; and Victoria Delavale, MPH, and Daniel Friedman, MD, at NYU Grossman School of Medicine.
NYU Langone Health / NYU Grossman School of Medicine
Gould, L., et al. (2024) Video Analysis of Sudden Unexplained Deaths in Toddlers. Neurology. doi.org/10.1212/WNL.0000000000208038.