My son’s respiratory equipment is being discontinued. What next?

Philips, a company that manufactures and sells respiratory equipment to a big portion of the United States, recently posted a statement saying it was discontinuing “the sale of hospital ventilation products, certain home ventilation products, portable and stationary oxygen concentrators, and sleep diagnostic products.”

This change was a shock to me, along with many others who rely on its CPAP or BiPAP machines. My 5-year-old son, Cayden, has been using a Philips Trilogy ventilator for sleep since he was 11 months old. Cayden needs his BiPAP to sleep comfortably; in fact, we’ve learned through sleep studies how poorly he rests without it. Poor sleep isn’t uncommon in people with Pompe disease, which Cayden has.

Cayden, here with his mother, Keara, sleeps with the BiPAP for one of his first times as an infant. (Photo by Keara Engle)

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Along with the BiPAP machine, Cayden also uses a Philips-manufactured cough assist machine. A daily part of his routine respiratory treatments, it pushes air into his lungs, then sucks it back out, imitating a cough. As a result, Cayden is less likely to get sick with pneumonia.

Hearing about the discontinuation had me immediately stressed. The company did say it will service the type of BiPAP machine Cayden uses until December 2025. But that’s already less than two years away. I knew we needed a plan — ASAP!

Working on a game plan

The medical supply company that rents us Cayden’s equipment came to our house a couple of days ago for a routine check to ensure all of his machines were working properly. While there, the representative let me know that the company will bring out a new BiPAP machine, called the Trilogy EVO, for Cayden in the near future.

We aren’t familiar with this new BiPAP machine, but representatives will train us to use it, as they do with every new piece of equipment. Unfortunately, this Trilogy EVO is still manufactured and serviced by Philips, and the recent statement says the sales of it were discontinued last month. But because it’s a newer model, it’ll be serviced through January 2029.

By that time, hopefully, a better game plan will be clear, and we’ll have already switched Cayden to a machine manufactured by a different company. It’s a shame we even have to worry about these kinds of problems, but I’m no stranger to it. The rare disease community faces many challenges. This one is just another to add to the list.

I’m thankful that Philips has agreed to service the machines for a while until patients and their doctors can determine next steps. This shift isn’t something any of us were expecting, but I have faith in Cayden’s medical team that it’ll get figured out!

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.