A groundbreaking new study has identified seizures as a potential cause of sudden unexplained deaths in children (SUDC), providing a major clue into these tragic and mysterious fatalities. Researchers analyzed videos from specialized crib cameras to capture the final days and moments of children who died suddenly, discovering convulsive events during sleep in over half the cases.
Seizures During Sleep Could Explain Many Child Deaths
The research, published this week in the journal Lancet Child & Adolescent Health and led by NYU Langone Health, reviewed data from 16 children who died suddenly and unexpectedly between the ages of 1 month and 4 years old. By using crib cameras provided to bereaved families studying the circumstances around their child’s death, researchers were able to capture the final nights and moments for many of these children.
Over half were observed experiencing what appeared to be an overt or subtle seizure-like event during sleep in the last day or hours before death.
“Getting real-world data showing what happened to these infants and children during their last days and hours with the help of these cameras can hopefully get us closer to understanding exactly what went wrong and prevent future tragedies,” said senior study author Dr. Orrin Devinsky, director of the Comprehensive Epilepsy Center at NYU Langone.
While sudden infant death syndrome (SIDS) has declined over the years thanks to national “safe sleep” campaigns stressing that babies should sleep on their backs without loose bedding, deaths from SUDC have remained steady, now accounting for nearly half of all sudden unexpected deaths in children younger than 5. Pinpointing the cause has puzzled experts for years, making this research breakthrough highly significant.
Crib Cameras Capture Critical Clues
The specialized crib cameras used in the study detect motion and record video, allowing parents to keep an eye on their sleeping child while in another room. For Dr. Devinsky and his colleagues, this footage captured critical clues in a child’s final days and hours that could unlock mysteries around their deaths.
“Getting access to these videos really made all the difference,” said Dr. Devinsky. The cameras record the sleeping environment, sleep position, objects near the child, audio of night noises, caregiver interactions, and crucially, the child’s last movements.
In over half the cases, the cameras recorded overt or subtle seizure-like behaviors during sleep in the 24 hours before death. Behaviors ranged from sudden jerking movements to more subtle behaviors indicating possible seizures that are harder to recognize in sleep.
Next Steps to Confirm Link
While the study marks an important advancement in perhaps finding a cause of many unexplained child deaths, more work is needed to definitively confirm seizures as the mechanism. Researchers were limited in determining whether death was directly caused by a seizure since there is no EEG recording of electrical brain activity.
Going forward, the research team aims to conduct expanded studies using additional technology like wearable wires that detect electrical activity and heart rate to better capture physiological data in the lead up to death. They hope the findings will pave the way for future prevention strategies.
“If we can better understand why these seizures occur in the first place, we may be able to find ways to prevent them and save lives,” said Dr. Devinsky. “It also raises hope that some deaths thought to be unexplained may have explanations waiting to be uncovered.”
A Breakthrough for Grieving Families
For the parents who lost their children and donated crib camera footage in hopes of finding answers, the research brings them one step closer in understanding what happened.
Morgan McCarthy, whose 1-year-old daughter Addison died suddenly last year, found solace in seeing seizures could be to blame. Her family’s footage showed Addison experiencing subtle seizure-like behavior in the night before her death.
“When we lost our daughter, there were no clues or reasons why this happened,” said McCarthy. “Finding out seizures could have played a role starts to help things make a little more sense.” She hopes to raise awareness and funding for more research and prevention.
Lisa Seymour’s son Finley died at 15 months old last spring. The relentless desire to find out why led her to donate crib camera footage in the research study.
“We spent so many sleepless nights staring at the footage in those last days, looking for any small thing we could have missed,” said Seymour. “To learn his death could have been caused by seizures is heart wrenching but also strangely comforting, like we can begin finding meaning.”
For grieving parents struggling to grasp why they lost a precious child without warning or reason, this breakthrough study offers a glimmer of light in the darkness. Understanding more of the “why” behind their child’s death can start to provide comfort and closure.
While more work remains ahead to keep solving the mystery of unexplained child fatalities, researchers and families alike find promise in what crib camera footage has unveiled so far. With this critical clue of seizures now in focus, work continues toward ultimately preventing these tragic losses.
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