Videos of cribs provide insight into puzzling deaths of children.
Unfortunately, the final time that 17-month-old Hayden Fell went to bed was tragically unremarkable. A video from the crib captures the toddler in his pajamas, enjoying himself while his parents and sister sang “Wheels on the Bus” with his twin sibling.
The following day, Hayden’s father was unable to rouse him. The young child had joined the ranks of numerous American toddlers and preschoolers who pass away unexpectedly in their sleep each year, with no apparent underlying health issues. Despite autopsies, the cause of death remains unknown. However, footage from Hayden’s crib camera provided a potential clue.
Researchers at NYU Langone Health have determined 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 studying home monitoring footage of seven young children who passed away in their sleep.
Like Sudden Infant Death Syndrome (SIDS), Sudden Unexplained Death in Childhood (SUDC) refers to unexplained deaths that occur after a child’s first birthday. Limited information is available about SUDC, but some researchers believe that seizures may be a contributing factor. Along with genetic studies, researchers have also discovered that children who died suddenly were about 10 times more likely to have a history of fever-related seizures compared to children of the same age who did not experience sudden death.
The recent research may be limited in scope, but it presents the initial concrete proof of a connection to seizures. From a group of forensic pathologists, a seizure expert, and a sleep specialist, it was determined that five young children passed away following what was considered to be a short seizure. Additionally, the findings published in Neurology suggest that a sixth child likely experienced a similar event.
Dr. Orrin Devinsky, a neurologist at NYU and the senior author of the study, expressed difficulty in watching the footage. He believes that the video provides the most compelling evidence of the children’s experiences.
The recordings do not provide evidence that fevers caused the seizures, but the researchers observed that several young children showed symptoms of minor infections. For instance, Hayden had previously experienced febrile seizures when he caught common childhood illnesses.
This poses a significant query: Febrile seizures are highly prevalent in young children, impacting approximately 2% to 5% of toddlers aged 6 months to 5 years. Although frightening, they rarely cause harm. Therefore, how can one determine if they could potentially be a sign of a more severe issue?
Justin Fell stated that he believed his child would be okay and that they just needed to wait for the situation to resolve itself. He shared that various medical professionals reassured their family in Bel Air, Maryland, to not be concerned about Hayden’s seizure caused by a fever. However, the reality turned out to be a terrifying experience for any parent.
Laura Gould, a member of the NYU research team, can relate to the overwhelming distress. In 1997, she experienced the tragic loss of her 15-month-old daughter, Maria, to a condition that would later be identified as SUDC. Maria had gone to bed with a fever and appeared to be her usual cheerful self the next morning, but sadly passed away during a nap. In response to this heartbreaking event, Gould co-founded the SUDC Foundation and was integral in creating NYU’s registry of approximately 300 deaths, including the initial seven videos submitted by families, for further study.
Gould is not hoping to cause alarm among families with the recent discoveries. The recommended course of action for febrile seizures will remain the same. Instead, further studies will focus on identifying any distinctions between the small number of children who experience fatal seizures and the majority who recover after occasional seizures.
She suggested that if we can identify the vulnerable children, we may have the opportunity to alter their future.
It’s hard for autopsies to find evidence of a seizure so using video from home monitors to reevaluate deaths “is actually very clever,” said Dr. Marco Hefti, a neuropathologist at the University of Iowa who wasn’t involved with the study but has also investigated SUDC.
He cautioned against parents becoming overly anxious and worried about every febrile seizure. However, Hefti suggested the need for further investigation, such as animal studies and potentially sleep studies in children, to gain a better understanding of the situation.
SUDC is responsible for approximately 400 deaths annually in the United States, with the majority occurring during sleep. Roughly 250 of these deaths occur in children between the ages of 1 and 4.
Infant fatalities that occur unexpectedly receive a lot of media coverage, as well as increased support for research. This has led to the discovery of risk factors and prevention measures, such as the recommendation to put babies to sleep on their backs. However, Sudden Unexplained Death in Childhood (SUDC) can also affect older children and is not as widely known. The Fells were unaware of SUDC until their child, Hayden, passed away.
In November 2022, Hayden passed away after experiencing his first seizure at the age of one due to a cold virus. He had previously recovered quickly from mild illnesses, but subsequent bugs caused multiple seizures.
Recent studies conducted by both NYU and a team from Boston Children’s Hospital have attempted to identify genetic connections to SUDC. These studies have revealed that certain children carried gene mutations typically associated with heart or brain disorders, such as irregular heart rhythms and epilepsy.
According to Devinsky, the deaths of the young children in the video study cannot be solely attributed to heart problems or mutations. He emphasized the need for further research but noted that individuals with epilepsy may experience breathing difficulties after a seizure, which could potentially lead to death. This raises the possibility that some cases of Sudden Infant Death Syndrome (SIDS) may be related to seizures.
Katie Czajkowski-Fell, mother of Hayden, is hopeful that the video evidence will lead to answers.
Rewording: “His life was too valuable and significant for us to not take action in response to this tragedy.”