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It's not just babies who need formula: Families of teens with medical needs are 'scared'

TODAY logo TODAY 5/19/2022 Meghan Holohan

Devon McCollum and Natasha Hall faced a dilemma that no parent wants to consider: Should they give their daughter, Charlotte, the recalled formula they had or take her to the hospital to be fed?

© Courtesy Devon McCollum

“Do we feed her the food that we have ... that can risk her health or could kill her? Or do we take her to the hospital because we have nothing else to feed her?" Hall, 37, of Enola, Pennsylvania, told TODAY Parents. “It was just terrifying because we are constantly on the verge of running out.”Charlotte, 13, has tuberous sclerosis complex, a condition where benign tumors grow throughout the body, McCullom explained. Many of Charlotte’s tumors are in her brain, which causes her to also have epilepsy. Until recently, prescribed formula and a strict keto diet helped control her seizures. But formulas made by Abbott Nutrition have been recalled because of possible bacterial contamination. The recall and resulting plant shut-down, coupled with supply chain issues, have led to a massive, nationwide formula shortage.

The formula shortage doesn't just affect babies. Older children, teens and adults with various health conditions who need formula can’t get it.

Hall explained that her family can't just buy whatever type of formula they can find; they need a specific type. “Charlotte also has malabsorption issues with her intestines and she struggles to digest certain proteins and certain sugars … she will vomit and bloat and get plugged up if her food isn’t just right.”

Charlotte is nonverbal but has a © Courtesy Devon McCollum Charlotte is nonverbal but has a

Charlotte’s medical team from Children’s Hospital of Philadelphia (CHOP) transitioned her to a new formula, Hall said, and that seems to be going OK so far.

“The only problem is because of the fact that everyone was swapping to Alfamino, it puts such a strain on the company to try and produce now suddenly for everybody,” Hall said. “As a result we didn’t get a formula delivery for a month.”

'Why don’t you just nurse her?' '...She's 16!'

Unfortunately, many other families are facing limited options. Sara Atkins' daughter, Freida, 16, recently started relying on formula after eating became too painful for her. 

“About a year ago she started struggling to eat, like it really hurt her,” Atkins, 42, from Wynnewood, Pennsylvania, told TODAY Parents. “She was just describing a physical pain and all summer we noticed she was decreasing in energy and decreasing input of what she ate and drank.”

Freida has eosinophilic esophagitis, autonomic dysfunction and GI motility problems. Last fall, her lack of nutrition affected her ability to stay awake in class. Then she started having dizzy spells. Doctors at CHOP treated her for dehydration and gave her an NG tube (a tube that delivers food to the stomach through the nose) to help her get nutrition in a less painful way. She was prescribed one of the now-recalled Abbott Nutrition formulas.

“She has about 60% of her calories now through the NG tube. She gets most of her hydration through the NG tube as well,” Atkins explained. “She started thriving.”

Courtesy Sara Atkins © Provided by TODAY Courtesy Sara Atkins

When Aktins learned of the recall she said she started “freaking out.” She called Freida’s medical team, who started working on a solution, but she did have to skip one feeding and give her daughter Powerade to keep her hydrated.

It took two days for doctors and nutritionists to come up with a new plan for Freida. The first new formula Freida tried made her sick, so they had to try another one. Each time, she needs a new prescription. The one she’s using now seems to be sufficient, her family said, but they worry it will run out and they’ll be stuck without any choices.

“Someone had the chutzpah to tell me, ‘Well why don’t you just nurse her?’ She’s 16! Secondly, swallowing is the issue, that’s what causes her pain,” Atkins said. “Nursing is not even an option.”

'There's no choice. What do we do?'

Bryan and Alison Harding have twin daughters, Hannah and Sarah, 16, who both use formula for their nutrition. They have cerebral palsy, seizure disorders, reflux and trouble breathing. While Hannah’s formula was not recalled, Sarah’s was. The family felt stunned by the news.  

“I was sick because there’s no choice. What do we do?” Bryan Harding, of Sayer, Pennsylvania, told TODAY Parents. “We had been giving her the formula that was part of the recall for I don’t know how long.”

“People don’t realize that there are kids out there that have some serious medical issues that have to take these really specialized formulas, © Courtesy Harding family “People don’t realize that there are kids out there that have some serious medical issues that have to take these really specialized formulas,

Her doctor changed her prescription, but then the home health supply company didn’t have it. So they called for a new prescription formula — that also wasn’t available.  

“We became more and more panicked and very, very scared,” Harding said. “Three or four tries later we finally got a formula and we gave it to her and the reflux just got worse and worse and worse.”

Sarah developed a viral infection and needed to be hospitalized. While she was there, doctors decided to give her a different feeding tube, a NJ tube, that goes into her small intestines, completely bypassing the stomach. It helps her tolerate the formula without reflux.

“We’re hoping that we can get back to the regular formula that she was on before,” he said.

While navigating the formula shortage has been tough of the Harding family, Bryan Harding says the family has © Courtesy Harding family While navigating the formula shortage has been tough of the Harding family, Bryan Harding says the family has

The Hardings don't know what will happen if this new formula also becomes hard to find.

“I have only two options. One is Sarah has to go to the hospital and then she’ll be placed on fluid or something called the TPN, total parenteral nutrition, or she doesn’t get any food,” he said. “Neither of them are good options so I’m really stuck.”

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