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reporter: febrile seizures affect up to 4% of children six months to 6 years old in america. deaths are extremely rare. doctors often tell parents that these seizures, these kinds of seizures are not a big deal, they re going to be okay. should they change that message? i think they should change it a bit and say there s an incredibly tiny risk that there could be a death related and there might be preventive measures if you wanted to take them. reporter: there are devices and wearables like socks to monitor children s oxygen levels during sleep. the fells wish they had known. for hayes. if parents can be warned that this is a possibility and they can be given that opportunity, like i would give anything to have had that opportunity, to try. to try and save him. if he can help give other parents that opportunity, that s a beautiful legacy for him to have. reporter: they hope this new study ignites more research to save other toddlers. ....
Give me a wiggle wiggle and he d go. try it, hayesy. reporter: right before his first birthday hayes had a seizure accompanied by a fever, what s called a febrile seizure. he had four more in the months that followed. what were those months like for you guys? exhausting. terrifying. what were the doctors saying? all of them said to us they re simple febrile seizures, he s going to grow out of it. i had one doctor look me in the eye and say if he s going to have a seizure this is the one you want him to have. reporter: in november 2022 they sang to hayes and his twin at bedtime. the family s baby monitor camera captured the moment. i love you. reporter: the next morning justin found hayes in his crib not moving. i mean, we both sat on the floor next to our kitchen our refrigerator just holding our heads in our hands, not you can t process reality. i just remember saying over and over again i don t understand. ....
Transcripts for KNTV NBC Nightly News With Lester Holt 20240604 00:20:15 archive.org - get the latest breaking news, showbiz & celebrity photos, sport news & rumours, viral videos and top stories from archive.org Daily Mail and Mail on Sunday newspapers.