If you’ve ever noticed a loved one suddenly take a long, gasping breath in, then pause before letting the air out, it can be alarming. This is what’s called apneustic breathing—a breathing pattern where the inhale stretches on too long, the exhale is short or incomplete, and there’s often a noticeable pause in between.
It doesn’t always happen. Some people have episodes that come and go, sometimes triggered by stress, excitement, or even changes in position. But it can be stressful to watch. Understanding why it happens can make it less mysterious and help you know what steps to take.
What Apneustic Breathing Looks Like
The pattern is pretty distinct once you know it:
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A deep inhale that keeps going for a beat too long
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A pause, like the body “forgets” what comes next
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A short, sometimes jerky exhale
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And often, the cycle repeats
It’s not the same as sleep apnea or fast, shallow breathing. Apneustic breathing comes from a disruption in the brain’s automatic breathing controls—specifically in the pons, a part of the brainstem. That’s why it’s more common in people who’ve had certain brain injuries or who live with neurological conditions like Rett syndrome.
The Connection to Rett Syndrome
Rett syndrome is a rare neurological disorder caused by changes in the MECP2 gene. It can bring a mix of challenges—motor difficulties, developmental changes, and unusual breathing patterns. Apneustic breathing is one of them.
For kids with Rett, the brain’s breathing “autopilot” can be a bit glitchy. You might see:
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Apneustic breathing while they’re awake
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Breath-holding spells
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Periods of rapid breathing (hyperventilation)
These patterns may look and sound worrying, but in many cases, oxygen levels stay in a safe range. Still, it’s worth discussing with your child’s care team—especially if episodes are frequent, long, or paired with changes in skin color or alertness.
Other Causes of Apneustic Breathing
Rett syndrome isn’t the only reason someone might breathe this way. Apneustic breathing can also happen after:
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A stroke affecting the brainstem
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Head trauma that injures the pons
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Brain tumors in or near the brainstem
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Inflammation like encephalitis
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Certain degenerative neurological conditions
In all cases, the breathing pattern is a symptom—not the problem itself. The real goal is figuring out why it’s happening.
How Doctors Figure It Out
Your healthcare team will typically begin by observing and listening to your breathing pattern. But because apneustic breathing is a sign of something else, they’ll often recommend more tests, such as:
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A neurological exam to check reflexes, coordination, and muscle tone
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Brain scans (MRI or CT) to look for changes or injury
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Breathing studies to measure oxygen and carbon dioxide levels
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Genetic testing if Rett syndrome or another genetic cause is suspected
Video recordings you take at home can be incredibly helpful—symptoms aren’t always as evident in a short doctor’s visit.
Treatment and Day-to-Day Management
There’s no one-size-fits-all treatment for apneustic breathing. What helps depends on the cause. If it’s due to an injury or infection, treating the root cause may improve breathing. For long-term conditions like Rett syndrome, the focus is on comfort, safety, and quality of life. That might mean:
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Monitoring oxygen during episodes
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Breathing therapy to keep the lungs strong
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Positioning to make breathing easier
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Avoiding known triggers when possible
Living With Apneustic Breathing
It’s one thing to read about a breathing pattern—it’s another to sit beside someone you love while it happens. It can stir up fear and helplessness, even if you know it’s not always dangerous. You might find yourself listening for every breath, wondering when the next episode will hit.
Here’s what can help:
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Work closely with your care team to spot patterns and make a plan.
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Connect with others who’ve been there—Rett syndrome and rare disease communities can be a lifeline.
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Give yourself grace. Worry is natural, but so is needing support for yourself.
Even if apneustic breathing doesn’t always mean a medical emergency, it’s a sign your loved one’s brain is working differently—and your attentiveness makes a difference.