The Downsides of Sleeping With a BiPAP

Keara Engle avatar

by Keara Engle |

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I knew having a child meant that I would lose a lot of sleep, but I didn’t realize the extent of it. Most children sleep through the night by age 4, but my son, Cayden, does not. There are many reasons why sleep is challenging for him, but it doesn’t make the sleepless nights any easier for me.

Cayden has to wear a BiPAP machine every night while sleeping due to his infantile-onset Pompe disease. Muscle weakness is one of the many symptoms of Pompe, and Cayden’s lungs and diaphragm have been severely affected. The BiPAP machine helps him breathe while he sleeps by forcing pressurized air into his lungs through a mask that he wears over his nose and mouth.

The problem is, Cayden hates the BiPAP machine. He’s been required to use it since he was just under a year old, but it’s still a struggle to get him to use it. I’ve talked to adults who have used a BiPAP machine, and they’ve expressed that it can be quite annoying to sleep with a mask on your face every single night. I’m sure Cayden probably feels the same way.

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While the BiPAP machine is great for getting air into the lungs, some of that air bypasses the lungs and makes its way into Cayden’s stomach. This causes an uncomfortable amount of air to accumulate in his stomach, which typically makes him wake up and cry multiple times a night.

Normally, burping would help to clear excess air from the stomach, but Cayden can’t do it after having Nissen fundoplication surgery when he was just 6 months old, due to acid reflux. The surgery prevents anything from escaping the stomach, even air.

The only way we can get this air out is by “venting” Cayden’s gastrostomy tube. To vent the tube, you insert an empty syringe into it and let all of the accumulated air escape. While Cayden expresses relief when I vent his tube, it’s something that must be done multiple times a night to keep him comfortable.

We aren’t sure whether the BiPAP will be a permanent tool for Cayden. He is part of a sleep study every one or two years to see how his body is functioning while he rests. So far, no such study has shown his specialists that he is ready to sleep without the BiPAP. And while we are hoping that Cayden will grow out of his sleeping issues, only time will tell.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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