We’ve mentioned several times that one of the common symptoms that come with Schaaf-Yang Syndrome is sleep apnea. Sleep apnea is something we knew very little about prior to Hayden, but since we’ve learned a lot about it. There are two types of sleep apnea: obstructive and central. Obstructive means that there is something obstructing the airway from functioning properly. This could be due to a variety of things, including enlarged tonsils or adenoids, a narrow airway, a tongue that sits in the back of the mouth, etc. Central means there is something in the central neurological system in your body that doesn’t tell your body to breathe when it is supposed to. Both obstructive and central are common with SYS.
We’ve done several sleep studies with Hayden since her birth and each one has shown differing levels (mild to moderate) of sleep apnea, including both obstructive and central. Her doctors believe her obstructive sleep apnea is caused by a couple of factors. First, she was born with a recessed chin, which created less space in her airway to breathe. Second, because of her low muscle tone, her muscles in her mouth, neck and throat aren’t as developed as a typical child. Third (and maybe related to the second), her inability to swallow appropriately may be causing excess saliva to be in the back of her throat, impacting her ability to breathe. Her central sleep apnea wasn’t as severe as the obstructive, but was still above normal levels when we performed her first couple of sleep studies.
Because of these results, there are a couple of options for treatments. One would be oral surgery to extend her chin and lower jaw to give more room – this would be the last resort and we will spare you what this entails. Another is to treat with medications that can help with saliva. We have started down this path with Hayden – she takes allergy medicine, Flonase, and Singulair everyday. In addition, repeat sleep studies to monitor her over time for improving/worsening symptoms.
This month was one of those sleep studies. The picture included in this post is what that looks like. When we get to the facility to perform the study, they immediately begin to attach nodes, cables, and other devices all over her head, nose, neck and chest. These studies capture neurological activity, breathing activity to through the mouth and nose, air intake and CO2 exhale, etc. to get as full of a picture of the quality of her sleep. Looking at her every time this is set up (this is the 4th one so far), it breaks my heart. It doesn’t seem fair that a baby girl has to go through what she goes through. How is she supposed to sleep when she is hooked up to computers like that? However, we do this because we love her and will do everything in our power to give her the best chance.
Waiting on these results is nerve-racking. We know there is nothing more we can do, which is part of the problem – we wish we could solve things for her, but we can’t. However, this time, the results were a relief. The latest study showed her sleep apnea, both obstructive and central have improved! What a relief… for now, because another sleep study comes in 6 months and we do this again.
With love,
Matt and Courtney
