Alexa Beichler started feeling nervous last week. When a shipment of prescription formulas for two of her sons arrived, half of it was missing. The home health company told her there wasn’t enough formula available for both children.
“We need this formula. We have probably about a one-month supply,” Beichler, 30 of Leesburg, Virginia, told TODAY Parents. “That’s going to go quick. I’m extremely nervous. I never thought in a million years we would have any baby formula issues, let alone (issues) with life-saving medical nutrition. It’s been a rude awakening.”
Beichler said her son Taylor, who is 20 months old, and his younger brother Jax, who is 5 months, both have a condition called classical phenylketonuria, or PKU, a rare “genetic inborn error of metabolism.” They can’t process a certain amino acid, so it builds up in the brain. Fewer than 20,000 people in the United States have this condition, and a “carefully planned and monitored diet” is the treatment for it, according to the National Organization of Rare Disorders.
“They can’t have anything that has protein in it, and we had come to find out that everything has protein in it,” Beichler said. “Their diet consists of 90% of their medical formula and they’ll have that for life.”
The specialized formula helps Taylor and Jax grow and develop without cognitive, behavioral and mood problems. Jax still uses a formula for infants, while Taylor relies on a different formula he started when he turned 1. Without this prescribed diet, neurotoxins build up in their brains and can cause permanent damage, starting with painful headaches that can lead to them losing their fine and gross motor skills, Beichler said.
“It really affects mood and behavior and things along those lines because it happens in the front part of your brain,” Beichler said. “It’s hard to distinguish between a 1 1/2-year-old tantrum or, ‘Do I have too much protein in my system?’”
She said problems can occur “within a matter of days” of being off the formula. That’s why Taylor and Jax must stick to a prescribed low-protein diet, which includes the formula.
“They are on a very low spectrum of foods that they can eat,” Beichler explained. “The formula is medically necessary.”
Beichler said she felt a little surprised that she couldn’t receive all the formula she needed because her children do not use a formula from Abbott Nutrition, the company making headlines during the national baby formula shortage.
While supply chain issues sparked the shortage, it became more serious after Abbott Nutrition shut down its plant in Michigan in February in the wake of reports of four infants developing bacterial infections after drinking its formula. Under a new plan from the Food and Drug Administration, the plant can reopen and start producing formula within two weeks, but families won't see more formula on the shelves for about six to eight more weeks.
“We’re feeling this fallout, this domino effect from the Abbott products,” Beichler said. “(Other) metabolic (patients) had to change formulas and they had to jump ship over to where we get our formula.”
Beichler has no other options for her children. She can’t buy products online because she’s heard that sometimes they’re counterfeit and have protein in them, even if they say they do not.
“It could be fake. It could literally be regular baby formula,” she said. “That’s super scary.”
Aside from navigating their nutritional needs, Beichler's boys have plenty of fun together. Beichler said Taylor acts like a “typical middle child,” always trying to get all the attention and make people laugh. She often finds Taylor jumping off things. He doesn’t speak too much yet, but in his effort to make everyone chuckle he tries tickling them while saying, "tickle, tickle, tickle."
Jax is already crawling because he wants to chase his big brothers “so badly,” his mom said. As the youngest, he acts pretty chill but he also wants to be a big kid.
Beichler said she doesn’t want to imagine a life without access to the formula her sons need.
“It’s terrifying to think about. It’s lifelong brain damage,” Beichler said. “They would have major cognitive disabilities — their quality of life would go to zero.”