We need more adaptive clothing options for my son with Pompe

Adaptive clothing is a big help, but it's expensive for a single mom

Keara Engle avatar

by Keara Engle |

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I’ve been on the hunt for adaptive clothing for years now. My 5-year-old son, Cayden, does fine with regular clothes, but that’s only because we’ve learned how to make it work. Adaptive clothing is something we all enjoy. It makes using his feeding tube much more manageable.

Cayden got his gastrostomy tube (G-tube) when he was only 6 months old. It was the second surgery he had after having a port placed. We use his G-tube every day to administer his feeds and medications. Infantile-onset Pompe disease has taken his ability to eat orally, so we heavily rely on his feeding tube.

I remember when Cayden was a baby and he had trouble gaining weight. We had to give him feeds overnight until he was about 2 years old to provide him with extra calories. Many infant pajamas are one-piece footie pajamas with a zipper in the front. I had to cut holes in the side of his pajamas so that we could run his G-tube out the side.

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The only other option would’ve been to run the tubing out the top of his pajamas through the neck hole, but I didn’t feel safe doing that. I don’t think it’s a good idea to let anyone sleep with a cord by their neck, let alone an infant. All I could think about was him rolling over and getting tangled in the tubing, so we never did that.

We could’ve used two-piece pajamas with a shirt and pants, which is what we do now. However, winters here in Pennsylvania can get extremely cold. His shirts would slide up overnight and he would get cold. It’s not advised to let children sleep with a blanket, either, because there’s a risk of suffocation.

We’ve bought a few pieces of adaptive clothing over the years that have been extremely helpful. Some clothing has hidden holes you can run a feeding tube through. The holes are so discreet you can’t even tell they’re there.

While these adaptive clothing options are great, they’re also very pricey. Children are constantly growing, and Cayden outgrows his clothes as fast as any other kid. Unfortunately, a piece of adaptive clothing for the size he wears now costs up to $50. As a single mom who has to budget wisely, I just can’t bring myself to spend so much money on one outfit that he’ll quickly outgrow. I’ve done it before, but it’s definitely not something I can afford to do often.

It’s also impossible to find these items in stores, so everything has to be ordered online. While I love online shopping, shipping adds to the already high cost of special clothing items.

I hope that in the future accessible clothing will become more widely available and affordable. It’s not fair that we have to cut clothing or pay an arm and a leg to get something that makes life a little easier. I will continue to be on the lookout for more adaptive clothing for Cayden, but for now, we’ll have to find ways to make his current clothing work with his feeding tube.

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.


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