Cyanotic Breath Holding Spells

Throughout all my studies, I have heard about cyanotic breath holding spells and knew what it was; however, I never realized how devastating it actually is to witness your child having one of these spells. Dylan has always had purple cries since the day he was born, but he has never held his breath long enough to pass out. Until recently. And I can honestly say, it’s been a horrifying experience!

For those who don’t know, a cyanotic breath holding spell is when you hold your breath long enough that no oxygen can circulate so your skin goes blue and you can eventually pass out from the lack of oxygen. Dylan’s episodes have occurred to the point that no oxygen gets to his brain, forcing him into a decerebrate position for a second or two until he passes out and takes a breath. As I previously said, it’s a horrifying experience.

Thankfully we managed to get one of his episodes on video which we were able to show to all of Dylan’s care providers. Neurology was involved and shown the video, which also, thankfully, they said was just a cyanotic breath holding spell and nothing more serious. They don’t think there’s any harm being done and the only treatment is to prevent them from happening. That is definitely easier said than done. When they do happen, we hold Dylan and try to force him to take a breath, but it is often us panicking while we feel our child go stiff and then limp in our arms.

My advice to anyone who has to experience anything like this is to get it on video. Trying to describe something like this in words proved to be extremely difficult. Our video circulated to everyone that cares for Dylan and was seen as shocking and hard to watch by most. It was at least comforting that the teams agreed how devastating this is for us. While I am grateful everyone feels this isn’t a serious issue and that Dylan will eventually outgrow them, it’s horrible feeling so helpless when he has a cyanotic breath holding spell.