Did you know that swallowing issues are extremely common in babies with Prader-Willi syndrome (PWS)?
A recent study from Cook Children’s Medical Center (CCMC) in Texas took a closer look—and what they found is something every clinician and parent of a child with PWS should know.
Understanding the Risks
In babies, the act of swallowing milk while still breathing is more complex than it seems. It requires careful coordination between the muscles that help us swallow and those that manage breathing. When that coordination doesn’t work well, food or liquid can go “down the wrong pipe”—into the lungs instead of the stomach. This is called aspiration, and when it happens without any coughing or choking to signal a problem, it’s known as silent aspiration.
Frequent aspiration, especially silent aspiration, can lead to serious health issues like pneumonia. In fact, data from the Global PWS Registry show that pneumonia is one of the top reasons infants with PWS (under age 2) are hospitalized. Silent aspiration may be playing a major role in those admissions.
What the Study Found
To better understand these issues, Dr. Sani Roy and her team at CCMC (Amy Trejo, Jennifer McReynolds, Andrea Fagerman, Ana Neblett, Dr. Yvette Johnson, Dr. Keisha Shaheed, and Dr. Kristen Taylor) conducted a retrospective chart review of infants with PWS who had undergone videofluoroscopic swallow studies (VFSS)—a special type of X-ray that shows how well a baby swallows.
Instead of launching a new clinical trial, the team reviewed the medical records of 18 infants with PWS who had received VFSS as part of routine care.
Here’s what they found:
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All 18 infants showed signs of dysphagia (swallowing difficulty) during their first VFSS.
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Nearly 40% had evidence of aspiration, and every one of those cases was silent—no coughing, no choking, just food or liquid slipping into the lungs unnoticed.
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Many of the babies had multiple VFSS studies done over time, allowing the team to track changes and complications.
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By reviewing hospital records, the team also found that silent aspiration may have played a role in about 1 in 5 of the acute care visits or hospital stays that occurred after these babies left the NICU.
What It Means for Care
As a result of this research, CCMC has made VFSS a standard part of care for newborns with PWS. Now, every baby with PWS receives a swallow study before discharge—even if bedside feeding exams appear normal. This proactive approach aims to catch silent aspiration early and inform decisions about safe feeding practices, including whether a feeding tube may be necessary.
This study supports similar findings from a study by Dr. Parisa Salehi's team in 2017 and also ties into other important research from ties into other important research from the CCMC team (feeding tube use & complications), including findings that G-tubes (placed directly into the stomach) may lead to more complications than NG-tubes (which go through the nose) in this population. Knowing how well a baby swallows can help guide those kinds of clinical decisions.
What's Next
Encouragingly, this work also opens the door to new treatment possibilities. Therapies like oxytocin could help strengthen swallowing skills and reduce risks down the road.
Most importantly, the findings remind us how vital it is to monitor feeding and swallowing closely in infants with PWS. Swallowing problems aren’t always obvious, but they can have serious long-term effects on health and development. More research is still needed to understand how these early difficulties impact kids as they grow—but thanks to studies like this, we’re already learning how to support them better from the very beginning.
Special thanks to Dr. Sani Roy for her contributions to this blog and for her continued work to improve care for individuals with PWS.
