Zayne Negoski, 5, who lives with his grandparents in Joliet, is dependent on a feeding tube and has been affected by recent formula recalls. He can’t swallow and has had to rely on a feeding tube since birth.

Zayne Negoski, 5, who lives with his grandparents in Joliet, is dependent on a feeding tube and has been affected by recent formula recalls. He can’t swallow and has had to rely on a feeding tube since birth.

Rich Hein / Sun-Times

Latest recalls of formula meant frantic search for family of suburban boy, 5, who needs it to survive

With help from La Rabida Children’s Hospital, Zayne Negoski of Joliet got an alternative tube-feeding formula. But his family and those of other medically needy kids have struggled and often had to pay more after Aug. 10 recall.

SHARE Latest recalls of formula meant frantic search for family of suburban boy, 5, who needs it to survive
SHARE Latest recalls of formula meant frantic search for family of suburban boy, 5, who needs it to survive
For seven days, Barb and Jim Negoski weren’t sure how they were going to be able to feed their 5-year-old grandson Zayne, who has only ever eaten through a tube and relies on specialized formula for all of his nutrition.

But the formula that keeps the little boy alive had been voluntarily recalled because of possible contamination from two kinds of harmful bacteria.

The Aug. 10 recall was the latest in a series of recalls this year involving different types of formula that began in February with infant formula and now affects formula for older children, including those like Zayne who have special medical needs. Two of the recalls have involved North Chicago-based Abbott Laboratories.

It took the Negoskis completely by surprise. They discovered it not through any announcement but only when Zayne’s regular delivery of medical supplies showed up as usual the next day at their Joliet home — but minus the 195 cartons of formula they’d been counting on.

That’s an entire month’s supply of meals for Zayne, who, because of multiple rare genetic disorders, is unable to swallow. The conditions he was born with have other digestive complications, too, including a tendency to vomit, which has required him to have surgery.

He’s been using the same brand of formula for years after his family tried other types but found they made him throw up.

The company that accepts his family’s insurance to supply the costly formula that Zayne relies on told the Negoskis it wouldn’t have any more of it until mid-September, when it expects back-orders to be filled.

Barb Negoski called Zayne’s medical team right away, looking for help.

Barb Negoski administers medicine to grandson Zayne, 5. He is dependent on a feeding tube and has been affected by the latest nationwide recall of formula, which left his family struggling to be able to feed him.

Barb Negoski administers medicine to grandson Zayne, 5. He is dependent on a feeding tube and has been affected by the latest nationwide recall of formula, which left his family struggling to be able to feed him.

Rich Hein / Sun-Times

Meanwhile, she pulled out a backup stash of formula she’d squirreled away in a closet in case of emergency.

“He was actually eating the food,” taking it in through his feeding tube just above his belly button, Barb Negoski says, when his dietitian at La Rabida Children’s Hospital called back with a new formula prescription — and a warning to check those backup containers of PediaSure Harvest against the list of formulas that have been recalled.

“Every carton I had was on the list,” Negoski says.

She was frantic.

‘Bad formula, and I can’t get any more’

“At 4 on a Friday, I find out this is bad formula, and I can’t get any more,” she says. “What can I do? And the poor kid’s got enough issues going on.”

Autism has left him unable to speak. When he goes anywhere outside his home where it’s not OK to crawl around, he needs a wheelchair. And the only way he has been able to get nutrition ever since he was brought home from the hospital as a newborn has been through a feeding tube.

Without the formula, “We had nothing to give him,” Jim Negoski says.

Zayne Negoski, 5, lives with his grandparents Barb and Jim Negoski in Joliet, who’ve struggled to find specialized tube-feeding formula for him in the wake of the latest nationwide formula recall.

Zayne Negoski, 5, lives with his grandparents Barb and Jim Negoski in Joliet, who’ve struggled to find specialized tube-feeding formula for him in the wake of the latest nationwide formula recall.

Rich Hein / Sun-Times

The latest voluntary formula recall by a company called Lyons Magnus, which produces formula for Abbott, has left the Negoskis and other families who have kids with complex medical needs struggling to provide for their children’s most basic need — to be fed.

Separate from Abbott’s infant-formula recall in February, the summer recall saw multiple brands of tube-feeding formula pulled from store shelves, leaving families scrambling to find safe substitutes their children can tolerate.

As Lyons announced a list Aug. 10 of dozens of food products it was recalling, Abbott said the recall was “due to the potential for microbial contamination, including Cronobacter sakazakii and Clostridium botulinum,” two potentially dangerous types of bacteria, the latter commonly known as the food-poisoning botulism.

“Although Clostridium botulinum has not been found in products, consumers are warned not to consume any of the recalled products even if they do not look or smell spoiled,” Abbott said in a notice on its website.

According to the federal Food and Drug Administration, “The products did not meet commercial sterility specifications.”

A full case of PediaSure Harvest formula for feeding tubes from Abbott Laboratories, which was on the Aug. 10 recall list.

A full case of PediaSure Harvest formula for feeding tubes from Abbott Laboratories, which was on the Aug. 10 recall list.

Tyler Pasciak LaRiviere / Sun-Times

Lyons Magnus already had recalled 53 products on July 28. But it expanded its list of recalled items to about 90, including oat milk, cold-brew coffee and formula that it manufactures on behalf of Abbott and other companies, including Kate Farms.

Abbott Labs cites ‘third-party manufacturer’

Asked about where the formulas are produced and whether they’re back in production, Abbott spokeswoman Brandi Martin, in a written statement, declined to respond directly, saying Zayne’s formula is “just one of the brands designed for pediatric tube-feeding usage included in the recall.”

Noting that the latest recall involved an outside formula-maker Abbott uses, Martin says, “While this recall was initiated by a third-party manufacturer, Abbott is working with the manufacturer to ensure all potentially affected product is removed from the market.”

The companies say cronobacter illness — which causes symptoms like urinary tract infections, fever and vomiting and is the same bacteria that sparked the earlier baby formula recall — is rare, but “vulnerable and immunocompromised persons may be susceptible to more severe symptoms.”

That’s what worries families of kids, like Zayne, who are medically vulnerable, kids who need around-the-clock care and multiple specialists for long lists of medical conditions.

It’s scarier still because these children in some cases aren’t able to speak, so they can’t describe any pain or discomfort they might be having.

Regina Rebeles and her daughter Jaelyn Oliva, 12, at their South Chicago home.

Regina Rebeles and her daughter Jaelyn Oliva, 12, at their South Chicago home.

Tyler Pasciak LaRiviere / Sun-Times

‘How am I going to feed my baby?’

For 12-year-old Jaelyn Oliva’s family, options for an alternative formula were even more limited than Zayne’s. Jaelyn — who has needed a gastronomy feeding tube, known as a G-tube, since around the time of her first birthday — has cerebral palsy, a seizure disorder and severe allergies, and she cannot speak or walk.

“I called La Rabida, crying, ‘Oh, my God, how am I going to feed my baby?’ ” says Regina Rebeles, Jaelyn’s mother. “I can’t just give her a gallon of milk and say that’s OK, I can’t just make her a sandwich.”

Then, she realized Jaelyn had been consuming recalled formula.

“I started freaking out, thinking: How many cases of this stuff have I given to my daughter already?” Rebeles says.

At La Rabida, in Jackson Park, it’s part of Robyn Felten’s job to help solve problems like these. Felten is the clinical nutrition manager at the hospital, which cares for children with complex medical conditions. She and her staff say they have at least 40 families whose children depended on one of the recalled formulas.

“This is huge,” Felten says. “We have so many kids on PediaSure Harvest and Kate Farms. We’re getting these frantic calls with parents in a panic.”

Some parents have shown up in the lobby of the hospital, unsure of what to do and desperately looking for answers. One of those mothers, whose 4-year-old relied on recalled formula, told the staff, “I have nothing to feed my child,” Felten says.

The mother of twin boys who rely on ventilators and G-tube feedings came from their home in Will County and picked up a short-term supply of formula.

For days, La Rabida’s nutrition staff scrambled to hunt down safe substitutes to meet the need. They raided a supply closet to dole out samples left by sales representatives.

Then, the dietitians made dozens of calls to families they hadn’t already heard from to make sure they knew about the recalls and what to do.

“No child has gone hungry, and we have been able to take care of every one of these crisis moments by telling them what substitute to give,” Felten says.

With insurance issues, alternatives cost more

Many of the substitutes end up costing parents more because they’re buying them only as needed at a grocery store rather than ordering through medical supply companies that accept insurance.

Even then, the alternatives are “impossible to find in the store,” Felten says. “They’re all on back-order and used up because of the first recall.”

Another hurdle is that different brands of formula might have different amounts of nutrients per milliliter. So, in some cases, the hospital’s staff needed to change the doses of these liquids, which get pumped through the tubes to feed these children.

Regina Rebeles holds two brands of tube-feeding formula she’s recently given to her daughter Jaelyn Oliva. The formula on the left, from Abbott Laboratories, recently was recalled. That left Rebeles with cases of formula that she’d stored in case of emergency that she now can’t give her daughter. The formula on the right is the formula she’s had to switch to to meet her daughter’s dietary needs.

Regina Rebeles holds two brands of tube-feeding formula she’s recently given to her daughter Jaelyn Oliva. The formula on the left, from Abbott Laboratories, recently was recalled. That left Rebeles with cases of formula that she’d stored in case of emergency that she now can’t give her daughter. The formula on the right is the formula she’s had to switch to to meet her daughter’s dietary needs.

Tyler Pasciak LaRiviere / Sun-Times

With food allergies, trial and error

Another challenge is that some of the kids have food allergies. So, while their regular formula was OK for them, if it got recalled, their families had to figure out whether the children could tolerate another formula, often through trial and error.

Jaelyn, for instance, can’t have nuts or eggs. For her, that rules out formulas containing peanut oil or those produced in plants where nuts also are processed.

Felten tracked down a possible solution for her — two cases of a Nestle brand formula that her mother was able to pick up from the hospital to bridge the gap until Jaelyn’s larger monthly supply could be delivered, paid for by insurance.

“Amazing” is how Rebeles describes Felten, as she sits with Jaelyn in the small apartment in South Chicago that’s on the same block where she grew up.

Jaelyn is on a couch in the living room, propped up with pillows. Mother sets daughter up for an afternoon feeding, connecting a clear plastic tube from the G-tube in the girl’s stomach to a pump resting on the kind of pole-on-wheels that holds up a hospital IV.

Regina Rebeles pours Compleat Pediatric feeding-tube formula into an IV bag for her 12-year-old daughter Jaelyn Oliva’s afternoon feeding.
Regina Rebeles pours Compleat Pediatric feeding-tube formula into an IV bag for her 12-year-old daughter Jaelyn Oliva’s afternoon feeding.
Tyler Pasciak LaRiviere / Sun-Times
Then, Regina Rebeles hooks up the feeding tube for her 12-year-old daughter Jaelyn Oliva.
Then, Regina Rebeles hooks up the feeding tube for her 12-year-old daughter Jaelyn Oliva.
Tyler Pasciak LaRiviere / Sun-Times

A full carton of the Nestle formula plus another half from a second container go into the clear bag that hooks to the top of the pole. The pump will run for about an hour. This is one of Jaelyn’s four daily feedings, which her mother oversees.

When the G-tube needs changing every few months, Rebeles can also replace it herself at home.

She carries her daughter around the apartment, from her bed to the couch, since Jaelyn can’t walk and uses a wheelchair. Some nursing help that had been provided by the state of Illinois ended about a year ago.

Rebeles, 43, is trying to finish her bachelor’s degree eight years after she first started taking classes.

“It’s been rough trying to take care of Jaelyn, but the formula shortage has made it even rougher,” she says. “It’s kind of scary to know what’s going on with these facilities with all this stuff popping up.”

With feeding changes, adjustments, time, stress

After a few tricky days while Jaelyn’s body adjusted to the new food, she’s now tolerating the changes well.

For Zayne, it took a little longer. On La Rabida’s advice, Grandma Barb tracked down some regular PediaSure at a chain store, which limited how much she could buy because of the nationwide formula shortages.

The new formula made Zayne burp a lot and throw up, too. It turned out he wasn’t allergic to anything in it, but making sure of that — by having him try it — added to the family’s stress.

“We feed him his dinner, and he goes to bed,” Barb Negoski says. “What if he has an allergic reaction when he’s in bed, and I’m in bed?”

The family couldn’t immediately swing the 90-mile, two-hour trip to and from La Rabida. Jim Negoski runs his own auto repair shop in Crest Hill, not far from their home, and Barb Negoski was preparing for eye surgery that would mean she couldn’t bend over or lift anything as heavy as a little boy.

And the substitute formulas they tried upset Zayne’s stomach.

“He’s not used to three different formulas in a week,” Barb Negoski says. “And he’s nonverbal, so he can’t say, ‘Grandma, my stomach hurts.’ When he’s not feeling right, you kind of play a guessing game.”

A supply of the feeding-tube formula that Zayne Negoski, 5, now relies on is stored in a closet.

A supply of the feeding-tube formula that Zayne Negoski, 5, now relies on is stored in a closet.

Rich Hein / Sun-Times

It took seven days for Zayne’s permanent substitute to be delivered to their home — with some extra cartons Felten ordered just in case.

Zayne’s grandparents don’t think he understands any of what was going on — just that his tummy was more upset than usual.

Now, he’s back to watching “Mickey Mouse Club” and “Bluey” cartoons, rubbing a squishy gray blanket on his face, army-crawling at a furious pace from room to room and, when someone needs to get at his G-tube to feed him, pulling up his shirt to help.

Zayne Negoski, 5, watches TV in his playroom.

Zayne Negoski, 5, watches TV in his playroom.

Rich Hein / Sun-Times

A sense of normalcy as kindergarten begins

Things settled down for Zayne just in time for him to start kindergarten earlier this month.

One afternoon, as he waits to be lowered from the little yellow schoolbus that brings him home to his cul-de-sac, Zayne starts bouncing in his wheelchair, squealing, and he claps his hands with a contagious joy.

That’s how Grandpa and Grandma know he’s spotted them.

They join in the applause outside and every other time when Zayne puts his hands together.

Jim and Barb Negoski greet their grandson Zayne, 5, as he is brought home from kindergarten.

Jim and Barb Negoski greet their grandson Zayne, 5, as he is brought home from kindergarten.

Rich Hein / Sun-Times

Grandpa Jim scoops Zayne up in his arms to carry him into the house for medicine through his tube and the end of the Minions movie before it’s time for dinner.

Grandma Barb washes out the feeding bag he used at school and checks his little backpack. There’s a note inside. Excited, she reads it out loud to her husband.

Though Zayne doesn’t eat the way that most kids do, at school that day, he sat at a table with other kids during lunchtime.

Tube-feeding formula Lauren FitzPatrick interview on WBEZ

HEAR THE REPORTER ON WBEZ

Click here to hear reporter Lauren FitzParick discuss the impact of the tube-feeding formula recalls on WBEZ.

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