How the Formula Shortage Has Affected Me as Someone With SMA

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by Alyssa Silva |

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Whether it has directly affected you or not, chances are you’ve heard about the formula shortage happening in the United States right now. It’s a serious issue, one that has people rationing what they have and living on a prayer that they’ll continue to be able to feed their little ones. While I don’t have children, my heart goes out to them.

After all, the shortage has directly affected me, too.

When the news broke in February, I was in the hospital. I had just gotten my nasojejunal (NJ) tube placed and was on a slow but constant feeding schedule. I “ate” for 24 hours a day. So you can imagine how startling it was for me to see the news break live while the feed was pumping into my small intestine.

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For the next few weeks in the hospital, I tried different formulas based on what was available and what would be offered to me at home. Panic about the shortage was becoming more and more prevalent. My durable medical equipment company was hurrying to arrange for formula to be delivered to my home, because otherwise, I couldn’t be discharged. My doctors were scrounging for a case of formula to tide me over in the event of a shipment delay. (As luck would have it, an impending snowstorm was also slowing down the process.)

Meanwhile, I was nervous about going home with a new medical device and wondering what I had gotten myself into.

I can tell you firsthand that this shortage has been stressful, sometimes scary (a girl’s gotta eat!), and most importantly, saddening. The stories I watch on the news of new parents crying about being unable to feed their children are heartbreaking. My friends who are new moms have expressed their struggles to me. And by some twist of fate, I’ve been in a similar predicament.

I have a long list of GI issues related to my SMA, which is why I got the NJ tube in the first place. But because of these issues, I’m also on a specific pediatric formula rather than an adult version. There aren’t many formulas like it that provide exactly what my body needs. That said, trying to actually obtain some has been all the more difficult.

There have been days when I’ve wondered if I’d have enough formula for my feeding tube in a week. My father even spent hundreds of dollars on one case — price gouging at its finest — because we were all a little worried. But in a situation like this, we’re taking what we can get.

The other day, my feeding tube was clogged. Unfortunately, clogged tubes aren’t unusual. They have to be swapped out every few weeks. But this time around, the tube was fairly new and should have been flowing fine. We were able to unclog it with several flushes, but soon after, my mother noticed something off about the formula. Upon closer examination, she saw the culprit of the tube clog: chunks. The formula had been sent curdled, and I’d been using it for a few days.

This is no one’s fault. Sadly, it’s a prime example of how difficult it is to find formula these days. Thankfully, I didn’t get sick. But the reality of this dire situation became especially clear that day.

I may not have a newborn child to feed, but I too know the struggles many families are facing. We are simply doing our best to navigate uncharted waters, not knowing when we’ll see land.

That said, I’m thankful that other countries are beginning to step in to help. I’m thankful that I have my parents and a great medical team to guide me. And I’m thankful for what this formula has done for me. I can only hope and pray that we’ll see that shoreline soon.

Note: SMA News Today 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 SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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