The last bedtime of 17-month-old Hayden Fell's life was heartbreakingly normal. A video from her crib shows the toddler happily playing in her pajamas while her parents and her younger sister sing “Wheels on the Bus” with her twin brother.
The next morning, Hayden's father was unable to wake him. The infant is one of hundreds of seemingly healthy infants and preschoolers in the United States who suddenly die in their sleep each year, and an autopsy can't determine why. However, the camera in Hayden's crib was recording throughout the night and provided a clue.
Seizures during sleep may be a potential cause of at least some cases of sudden unexplained death (SUDC) in childhood, researchers at New York University Langone Health said Thursday. reported on the results of an analysis of home surveillance video that captured the deaths of seven infants.
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Similar to infant SIDS, SUDC is a term that refers to these mysterious deaths that occur after a child's first birthday. Little is known about SUDC, but some scientists have long suspected that seizures play a role. In addition to some genetic studies, scientists also found that children who died suddenly were about 10 times more likely to have had fever-related seizures than young people of the same age. discovered.
Although the new study is very small, it provides the first direct evidence of a link to seizures. Five of the infants died shortly after what a team of forensic pathologists, seizure specialists and sleep specialists determined were brief seizures. A sixth child likely also had one, according to research published online in the journal Neurology.
Hayden Fell, a 17-month-old boy from Bel Air, Maryland, was one of the hundreds of American babies who die in their sleep every year, without explanation. But the baby monitor camera that was recording Hayden that night provided a clue. (via AP)
“It's painful to watch,” said Dr. Orin Debinsky, a neurologist at New York University and the study's senior author. “We've got the video, which in some ways is the best evidence we might ever have about what happened to these kids.”
Although the recordings could not prove that fever caused the seizures, researchers noted that several infants showed mild signs of infection. One of them, Hayden, had previously suffered from febrile seizures when he caught bugs as a child.
This raises a big question. Fever-related seizures are very common in young children, affecting 2% to 5% of infants from 6 months to 5 years of age. Although scary, they are unlikely to cause any harm. So how can anyone tell if sometimes it could be a warning to something more serious?
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Justin Fell explained how multiple doctors told Hayden's family in Bel Air, Maryland, “not to worry'' every time Hayden had a fever attack, adding, “I thought he was going to be fine.'' However, it was just a matter of letting things continue as they were.” Rather, “it was every parent's nightmare.”
Laura Gould, one of the New York University researchers, understands that painful frustration. In 1997, she lost her 15-month-old daughter Maria to a disease later named SUDC. The toddler woke up one night with a fever, but the next morning she was as happy as ever, until she died while she was taking a nap. Gould later co-founded her non-profit SUDC Foundation and created a registry of approximately 300 deaths at New York University, including the first seven videos of her provided by her family for her research. Contributed to the creation.
Gould doesn't want his family to be scared off by new discoveries. The family does not intend to change the advice regarding febrile seizures. Instead, researchers now need to determine whether it is possible to tell the difference between the very rare children who die and the general population, who do well despite occasional seizures. be.
“If we can understand which children are at risk, we may be able to change their outcomes,” she says.
Dr. Marco Hefti, a neuropathologist at the University of Iowa, said using home monitor video to reevaluate deaths is “actually very smart” because it's difficult to find evidence of seizures at autopsies. We investigated SUDC.
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“Parents don't need to stress or panic every time they have a febrile seizure,” he warned. But Hefti said it's time to do additional research, including animal studies and possibly sleep studies in children, to better understand what's going on.
It is estimated that SUDC claims more than 400 lives annually in the United States, most of which occur during sleep. Slightly more than half, or approximately 250 deaths per year, occur among children between the ages of 1 and 4.
Sudden infant death is occurring more frequently and attracting more public attention. It has also provided more research funding to uncover risk factors and preventative advice, such as putting infants to sleep on their backs. However, SUDC can also occur in young people well past the age of SIDS. The Fells had never even heard of it until Hayden died.
Shortly before his first birthday, Hayden experienced his first bout with a fever brought on by a cold-like virus. A few more minor bugs occurred, but Hayden always bounced back quickly and passed away on a November night in 2022.
Other recent research by a team at New York University and Boston Children's Hospital explored genetic links to SUDC and found that some children carry genetic mutations associated with heart or brain disorders such as arrhythmia and epilepsy. It turned out that there was.
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Devinsky said heart diseases involving these mutations cannot explain the deaths of the infants in the video study. He cautioned that more research was needed, but said people with epilepsy can experience difficulty breathing after a potentially fatal seizure, and that perhaps some SIDS deaths were linked to seizures. He raised the prospect that there may be a connection.
Hayden's mother, Katie Chakowski-Fell, hopes the video evidence will eventually lead to answers.
“His life was too precious and too important to us to not try to do something about this tragedy.”
