Scientists Have Discovered The Likely Cause of Sudden Unexplained Death in Children

In a groundbreaking study conducted by researchers at NYU Grossman School of Medicine, scientists have made significant progress in understanding the perplexing issue of sudden unexplained deaths in children. These tragic and unexpected deaths, which often occur during sleep, have puzzled experts for years. However, the study has identified a potential cause: brief seizures accompanied by muscle convulsions. This discovery could bring hope to thousands of families who have experienced the devastating loss of a child. The study’s findings were published in the journal Neurology.

Sudden Unexplained Death in Children (SUDC)

According to experts, about 3,000 families in the United States experience the heart-wrenching loss of a baby or young child each year without any explanation. While most cases involve infants in what is known as sudden infant death syndrome (SIDS), a significant number, around 400, are children over the age of one who succumb to sudden unexplained death in children (SUDC). Shockingly, over half of these children are toddlers. The high prevalence of these deaths highlights the urgency to find answers and solutions. (1)

The Study’s Findings

To better understand SUDC, researchers at NYU Grossman School of Medicine established a registry of over 300 cases over a decade ago. In this recent study, the research team meticulously analyzed medical records and video evidence donated by families. Their investigation focused on the deaths of seven toddlers between the ages of 1 and 3 that were potentially associated with seizures. It was discovered that these seizures, lasting less than 60 seconds, occurred within 30 minutes before each child’s death. 

The Link Between Seizures and Sudden Death

Previous research had indicated a connection between sudden death events in children and a history of febrile seizures (seizures accompanied by fever). The study confirmed this connection, as febrile seizures were noted in one-third of the SUDC cases registered at NYU Langone Health. Moreover, the research revealed that children who died suddenly and unexpectedly were ten times more likely to have had febrile seizures compared to those who did not. This crucial finding suggests that seizures play a significant role in sudden unexplained deaths in children.

“These study findings show that seizures are much more common than patients’ medical histories suggest, and that further research is needed to determine if seizures are frequent occurrences in sleep-related deaths in toddlers, and potentially in infants, older children, and adults,” said study senior investigator and neurologist Dr. Orrin Devinsky. “Studying this phenomenon may also provide critical insight into many other deaths, including those from SIDS and epilepsy.” (2)

Video Evidence and Insights

A unique aspect of this study was the availability of home video recordings at the time of each child’s death. Out of the seven recordings analyzed, five captured evidence of seizures, including direct sound and visible motion indicative of convulsions. These recordings were crucial in implicating seizures as a potential cause of the deaths. In one case, a muscle convulsion, a definitive sign of a seizure, was observed, while only one child had a documented previous history of febrile seizures. The thorough analysis of these videos provides concrete evidence that seizures may be responsible for some sudden deaths in children.

Implications and the Path Ahead

Lead investigator Laura Gould, who tragically lost her own daughter to SUDC, emphasizes the importance of this study’s findings. She states: “Our study, although small, offers the first direct evidence that seizures may be responsible for some sudden deaths in children, which are usually unwitnessed during sleep.” The potential implications go beyond SUDC, as studying the relationship between seizures and unexplained deaths could shed light on other conditions such as SIDS and epilepsy.

Dr. Devinsky believes that convulsive seizures may be the “smoking gun” that medical science has been searching for to understand why these children tragically die. However, further research is necessary to determine precisely how seizures, with or without fever, lead to sudden death. Difficulty breathing immediately after a seizure is a possible cause, particularly when children are sleeping face down on their stomachs and no one is present to witness the event.

The Future of Research and Support

The study highlights the critical need for continuous monitoring of child deaths and improvements in health records to accurately track the occurrence of convulsive seizures before death. Seizure-related deaths are often underreported in both epilepsy patients and those without a history of epilepsy. Establishing a nationwide system to study and document these seizures could provide vital insights into preventing sudden unexplained deaths in children.

The importance of family support cannot be overstated. The study could not have been conducted without the dedication and collaboration of numerous families who donated video evidence and medical records. Their contributions have paved the way for further research and understanding of these devastating occurrences.

The Bottom Line

Scientists at NYU Grossman School of Medicine have made a significant breakthrough in understanding the likely cause of sudden unexplained deaths in children. The study’s findings strongly suggest that seizures, particularly those accompanied by muscle convulsions, may be responsible for some of these tragic deaths. This discovery raises hope for preventing future occurrences and providing solace to families who have experienced the unbearable loss of a child. While as of now recommendations have not changed for parents and how to protect their babies and toddlers, there is hope that soon preventative measures will be known. Further research and collaboration are crucial in unraveling the mysteries surrounding sudden unexplained death in children and improving child healthcare outcomes for future generations.

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