Adapted from UMPC Adult Spina Bifida Clinic Winter 2021 Newsletter

Sleep apnea in adults with Spina Bifida is a common but very serious condition. Unfortunately, many adults don’t realize they have sleep apnea and can go undiagnosed & untreated for too long.

Sleep apnea occurs when a person stops breathing or has slow or shallow breathing during sleep. It’s often associated with excessive sleepiness, dry mouth, or headaches. Sometimes it can sound like snoring, gasping, or choking – which typically are reported by another person, not the person sleeping.

What’s the link between sleep apnea and Spina Bifida? Here are a few ways that conditions closely linked to Spina Bifida can cause sleep apnea:

1. Weight
   • Children and adults with Spina Bifida have higher rates of being overweight and obese compared to the general population. Excessive weight is the strongest risk factor associated with sleep apnea and this risk factor can prevent normal breathing during sleep.
2. Chiari II Malformation
   • Commonly found in people with Spina Bifida Myelomeningocele, Chiari II Malformation is an abnormality of the back part of the brain and can cause problems in the way the brain controls breathing during sleep.
3. Scoliosis
   • Scoliosis is common among people living with Spina Bifida and is typically proportionate to where the lesion occurs on the spine. Scoliosis has an impact on pulmonary function and can often make sleep apnea worse because the lungs can’t move normally.

When sleep apnea goes untreated, it can cause problems with thinking, metabolism, the immune system, and the heart and circulatory system. If you believe you might have sleep apnea, or you’re worried you might have sleep apnea, it’s not something you should ignore or wait to treat.

What can you do?

• Talk to your doctor! If you have a specialist who you see for your Spina Bifida, they would be a good person to start talking to. If not, talk to your primary care doctor and let them know about your concerns. You can always share the Sleep Related Breathing Guideline with your physician if they’re unfamiliar with or question the correlation between Spina Bifida & sleep apnea.
• Seek a sleep specialist. Hopefully, your doctor will help refer you to a sleep specialist. When referred to a sleep specialist they’ll be the only provider who can test to determine if you have sleep apnea.
• There’s an app for that! If you live alone, or you’re uncertain about whether this is something to take to your doctor or not, there is a mobile application that will record your snoring, it’s intensity, and duration. Recordings can be saved to share with your doctor that could help determine if you need to see a specialist or not.

If you are found to have sleep apnea, you will be offered a treatment to help your body breathe better at night. By understanding sleep apnea, identifying it, and getting early treatment, you may be able to sleep better and prevent long term risks associated with this condition.

If you need assistance in finding a physician to seek treatment from or have questions, please contact our National Resource Center.