'My Kids Need Special Baby Formula, We're Almost Out and I'm Terrified'

My 20-month-old son Taylor and my 6-month-old boy Jax have both had classical Phenylketonuria (PKU), an inherited metabolic disorder, since they were born. This means that their bodies cannot process one of the amino acids in protein: phenylalanine.

Both boys can only have two grams of protein a day. One gram comes from a special formula that contains reduced phenylalanine, and the other gram comes from food.

The problem is, if you eat too much protein, that phenylalanine backs up in the bloodstream and brain and can start limiting your cognitive skills.

When Taylor's phenylalanine levels get too high, he smacks his head on the floor and cries all day long. It's been explained to us that he hits his head because his head hurts from the excess phenylalanine, and there's no other way to tell us that.

Alexa and her family
Alexa and her family. From left to right: Taylor, 20 months; Alexa, 31; Jax, 6 months; Carson, 4; and Ian, 39. Alexa and Ian are grappling with the wider baby formula shortage affecting the U.S. Laurie Ehrmantraut/LCE Photography

We take Taylor and Jax's blood every Sunday, before sending it to the Children's National Hospital near to where we live in Leesburg, Virginia. Doctors there test their phenylalanine levels, and a week later, we get their blood back. We need to know so we can ensure we're balancing their protein levels. You've got to be right in the sweet spot, which is very hard to do, especially with our little one, Jax. His formula recipe gets changed every week because he's growing so much.

So, we're really feeling the ripple effects of the U.S. baby formula shortage. We use a product by the brand Nutricia, but there's only three big companies that make the type of formula product we use—Cambrooke, Nutricia, and Abbott.

Now, the formula we use is nowhere to be found. It's not anywhere. I've even been talking to the director of one of the main companies who produce the type of formula we use, and she told me that they are two weeks out from having more of the formula ready, and then it will be another two weeks until pharmacies get it.

Other people are hearing other things. We've compared notes with other parents and they've been told from their dietician that their formula gets here this week. It's confusing, and that's the scariest part.

Once I shared my story online, people started to send me expired samples. I probably got an extra week's worth out of that from people reaching out and sending them to me from the PKU community, but we have less than two weeks worth of formula left now.

Right now, we're trying to switch Taylor back to an infant PKU formula, that's what we've been directed to do by medical professionals. It's not going well. So far, he hasn't finished it. We're trying to do half and half to make it through the whole month. But if my son is not going to take the mix, what do I do?

I can only assume that Abbott must have been the main PKU formula brand for parents, because of the amount of parents that seemed to have switched over to the brand we use and completely depleted supplies.

Alexa and Jax
Alexa and her son Jax, who has PKU and is 6 months old. Alexa and her husband are feeling the stress and anxiety of not knowing when they will have a reliable source of specialized baby formula. Laurie Ehrmantraut/LCE Photography

This is going to affect my son's quality of life, for his entire life. If we don't have his formula for a few days, his brain capacity is going to be affected. It does not take long for the excess protein to start affecting his brain, and that can be lifelong. It's difficult to completely reverse.

Me and my husband are going crazy over this. We talk about it every minute of every day, it's consumed us for the past three weeks. I think I've had maybe one night's worth of sleep in that time. I stay up at night thinking, "Okay, what if we try this? What if we try that?"

Another aspect of it is the expense. Our insurance technically only pays for this $5,000-a-month formula until the boys are one year old. They've been very nice to us and paid it all so far. But at any point in time, they could say, "Hey, we're done with you."

People don't realize that my kids are going to be on formula when they're kids, teens, young adults, and into adulthood. It really needs to be known that people with metabolic issues can be on this formula all the time. It's a big problem that people who don't have insurance can't pay for this. We're skipping vacations and all life's extras.

This shortage is really affecting me. My husband and I are snapping at each other because without sleep, we have very low patience. At the end of the night, we try to apologize for the things we said, because we're all just trying to do the best we can. I think I've got around 30 gray hairs—I just turned 31!

It's gotten to the point where my husband and I have looked at getting legally separated so I can get single mom benefits just to pay for this. That's where we're at right now. It's a constant state of fear and anxiety, and at any second, I feel as if I could just explode.

That's no way to be living.

Alexa Beichler is a mom-of-three who lives in Leesburg, Virginia.

All views expressed in this article are the author's own.

As told to Ed Browne.