The last bedtime of 17-month-old Hayden Fell’s life was heartbreakingly normal. Crib video shows the toddler in pajamas playing happily as his parents and sister sang “Wheels on the Bus” with his twin brother.

The following day, Hayden’s father was unable to rouse him. The young child had joined the ranks of numerous seemingly healthy American toddlers and preschoolers who tragically pass away in their sleep each year, with autopsies unable to provide a cause. However, a possible lead was captured by Hayden’s crib camera, which had been recording throughout the night.

NYU Langone Health researchers have found that seizures during sleep could be a contributing factor to cases of sudden unexplained death in childhood, also known as SUDC. This conclusion was reached after examining home monitoring footage of seven sleeping toddlers who passed away.

Similar to SIDS in babies, SUDC is the term when these mysterious deaths occur any time after a child’s first birthday. Little is known about SUDC but some scientists have long suspected seizures may play a role. In addition to some genetics research, scientists also have found that a history of fever-related seizures was about 10 times more likely among the children who died suddenly than among youngsters the same age.

The recent research is limited in scope, but presents the initial conclusive proof of a connection to seizures. According to the report published in the online edition of Neurology, five of the young children passed away following movements that were identified as a short seizure by a team of forensic pathologists, a specialist in seizures, and a specialist in sleep. It is likely that a sixth child also experienced a seizure.

Dr. Orrin Devinsky, a neurologist from NYU and the senior author of the study, expressed that it is difficult to witness. The video footage serves as strong evidence of the children’s experiences.

The recordings do not provide evidence that fevers caused the seizures, but researchers observed that some young children showed symptoms of minor infections. For example, Hayden had experienced similar febrile seizures in the past when he caught common childhood illnesses.

This brings up a significant issue: Fever-induced seizures are extremely prevalent among young children, impacting 2% to 5% of kids between the ages of 6 months and 5 years. Although frightening, they are rarely dangerous. However, is it possible to determine if they could potentially be a sign of a more serious condition?

Justin Fell recalled that despite being reassured by doctors, he believed his son Hayden would recover on his own from a fever-induced seizure. However, the situation turned into every parent’s worst fear.

Laura Gould, a member of the NYU research team, can relate to the overwhelming frustration. In 1997, her 15-month-old daughter Maria passed away from what was later identified as SUDC. Maria had woken up in the night with a fever and seemed her usual cheerful self the next morning, but unfortunately died during a nap. In response to this tragedy, Gould co-founded the SUDC Foundation and played a role in creating NYU’s registry of approximately 300 deaths, including the initial seven videos provided by families, for further study.

Gould hopes to prevent families from being frightened by the recent discoveries, as they do not call for any changes in recommendations regarding febrile seizures. The focus for researchers moving forward will be to determine if it is feasible to distinguish between the small number of children who experience fatal seizures and the majority who recover without any issues after an occasional seizure.

She stated that if we can identify the vulnerable children, there is a possibility to alter their future.

Reworded: Dr. Marco Hefti, a neuropathologist at the University of Iowa who was not involved in the study but has researched SUDC, stated that it is difficult for autopsies to detect evidence of a seizure. Therefore, utilizing video footage from home monitors to reassess deaths is a clever approach.

Parents do not need to be overly worried or afraid about every febrile seizure, according to the caution of the speaker. However, Hefti suggests that further investigation, such as animal studies and potentially sleep studies in children, should be conducted in order to gain a better understanding of the situation.

SUDC is estimated to claim over 400 lives a year in the U.S. Most occur during sleep. And just over half, about 250 deaths a year, are in 1- to 4-year-olds.

Infant fatalities that occur unexpectedly receive significant media coverage and research funding, leading to the discovery of risk factors and preventative measures such as placing babies on their backs while sleeping. However, Sudden Unexplained Death in Childhood (SUDC) affects older children and the Fells were unaware of its existence until Hayden’s passing.

Hayden experienced his first seizure shortly before his first birthday, when a cold-like virus sparked a fever. Additional mild bugs triggered several more but Hayden always rapidly bounced back — until the night in November 2022 when he died.

Recent research conducted at NYU and by a group from Boston Children’s Hospital has aimed to identify genetic connections to Sudden Unexplained Death in Childhood (SUDC). These studies have uncovered that certain children carry genetic mutations linked to heart and brain conditions, such as abnormal heart rhythms and epilepsy.

According to Devinsky, the fatalities of the young children in the video study cannot be solely attributed to heart problems or genetic mutations. He warned that further investigation is necessary, but noted that individuals with epilepsy may struggle with breathing after a seizure, which could potentially result in death. This raises the possibility that certain cases of Sudden Infant Death Syndrome (SIDS) may also have connections to seizures.

Katie Czajkowski-Fell, Hayden’s mother, is hopeful that the video evidence will ultimately lead to answers.

“We felt compelled to take action and make something meaningful out of this tragedy because his life was incredibly valuable and significant.”

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