SAN FRANCISCO — For Jane Stefan, the nationwide formula shortage didn’t just mean the inconvenience of seeking an alternative brand for an infant. It triggered something much more dire: She had to have her 6-year-old daughter, Vivienne Pereira, admitted to the hospital for IV nutrition.

Vivienne, described by her mom as a “firecracker” and a “goofball,” has a rare digestive syndrome called chronic intestinal pseudo-obstruction that prevents food and fluids from moving through the intestinal tract. A stomach tube supplies her with prescription formula about 21 hours a day. She carries around the juice-box-size containers in her Baby Yoda backpack.

Vivienne is among about 500,000 children and adults in the U.S. with medical conditions that necessitate specialized formula for all or most of their nutritional needs, usually delivered via tubes surgically implanted in their stomachs or small intestines, or sometimes via nasogastric tubes (which travel to the stomach through the nose) or by mouth. Medically fragile, many of them cannot switch brands because of sensitivities to ingredients.

Now, the formula shortage has ignited fears among “tubie” families, fraying the slim lifeline they depend on for their children.

“These medical kids have no other options but one formula because they’ve tried everything else,” said Stefan, 34, a single mom who lives in Galt, near Sacramento. “They are literally having to be hospitalized or be guinea pigs to try other formulas that make them sick, lose weight and struggle. I want to bring awareness to how critical it is; these kids are really suffering.”

Formula supplies were already tight due to pandemic supply-chain issues, but the shortages became extreme starting in February after Abbott, the nation’s largest formula manufacturer and the only maker of EleCare, a specialized hypoallergenic formula, shut down production at a plant and recalled several brands of formula because of possible bacterial contamination. Customers, including parents of infants, switched to other formula types, which caused downstream shortages among other brands.

For some families of children with special needs, the effect was devastating.

“When I was down to one can of formula, I’ve never felt so frantic in my entire life,” said Keely Aguilar, 43, a single mom of two in Santa Rosa. Her daughter Nataliyah, 11, has Bainbridge-Ropers syndrome, a rare genetic condition. Nataliyah does not walk, talk or eat; she has severe developmental and physical delays; and she relies on formula via what’s known as a G-J tube for all her nutrition.

“She’s a happy, sweet, loving, funny little girl,” Aguilar said. “She raises her eyebrows when she thinks she’s funny. She laughs and shows love and emotion.”

At times, the formula shortage felt incredibly cruel.

“I have to keep my daughter alive every day in a million other ways,” Aguilar said. “I have to stimulate her to breathe, (handle) mobility issues, respiratory; we have so many problems. Then to have this formula situation on top of it, where we can’t feed her and no one has a plan in place. It’s absolutely shocking we got into that situation.”

Aguilar still remembers the sinking feeling in February when she learned that EleCare had been recalled. She tried an alternative that caused Nataliyah to have “writhing pain, kicking her legs, screaming, crying.” Aguilar tried another one that did work — but soon supplies of that one dried up.

That prompted a desperate hunt.

“Every single day I was spending my time trying to source formula to keep my child alive,” Aguilar said. “This is her sole source of nutrition … throughout the day.”

She spent hours calling Nataliyah’s doctors and her medical supply company, begging for help.

Down to her last can, she was about to take Nataliyah to the hospital for IV nutrition when moms on a Facebook group told her of some cans at a Petaluma hospital. Other moms offered her a few cans to tide her over. Friends from overseas sent or bought cans. Another Facebook user said she had 25 cans and would ship them for $250. Aguilar sent the money — but the woman disappeared on her.

Her story received publicity on TV newscasts. Nataliyah started a GoFundMe, which helped her to buy cans on Amazon where they were selling for sky-high prices. She used money from the GoFundMe to help other families struggling with the same situation.

Stefan’s odyssey was similar.

By March, Stefan started to notice the problem. Usually she receives a 30-day supply of formula from a medical provider, covered by Medi-Cal. “It started becoming more of a panic, where we’d get only a week at a time. We’d get notices saying, ‘We don’t know if we’ll have formula for you next month.'”

Stefan tried other formulas for Vivienne. One substitute gave her diarrhea, dehydrating her. Another type clogged her feeding tube — so much so that it had to be surgically replaced.

Her doctor’s office got the manufacturer to send a couple of weeks’ worth of formula. Stefan found more through parents’ groups on Facebook. Some was on Amazon at hugely inflated prices. She paid.

When she got down to two days’ worth of formula in late June, she took Vivienne to the hospital for an IV and the tube replacement. Fortunately, the hospital soon scrounged up another weeks’ worth of formula so they could go home after a day.

She still has a patchwork of sources and nowhere near her usual 30-day supply.

Unfortunately, the shortages are likely to continue into the fall.

Abbott’s Michigan plant restarted production of EleCare in mid-June but soon was flooded by torrential storms, forcing another shutdown. The company says it will take several weeks to assess damage and sanitize the facility, although it says it produced almost a typical month’s worth of output before the shutdown.

“It’s very scary for parents,” said Cynthia Reddick, a registered dietitian in Sacramento who is a home tube feeding expert and educator. “Hospital admission is an extreme method (of getting nutrition) and very expensive to treat this. The health care impact has been significant, with phones blowing up (at providers’ offices) from people desperate to find alternatives or (get help) with bad reactions” to alternative formulas.

Another problem, Reddick said: Some people may be trying to stretch powdered formula by mixing less of it. “That can be really dangerous,” she said.

Families and advocates for those who depend on medical formula say they’d like the government and manufacturers to give them priority for the limited supplies.

“It’s certainly a crisis,” said Mary Jo Strobel, executive director of the American Partnership for Eosinophilic Disorders, or APFED, which works with people who have that disorder, one of about 350 medical conditions that can necessitate tube feeding.

A related issue: APFED and many other organizations are backing the federal Medical Nutrition Equity Act, which would require insurers to pay for medically necessary formula, which can cost more than $2,000 a month out of pocket. “For the pediatric population, the risks are profound,” Strobel said, citing unnecessary surgery, repeated hospitalization, intellectual disability, malnourishment and even death as consequences from inadequate formula supplies.

For many families now seeking formula, social media has been a better source of help and information than their doctors or medical supply companies, they said.

“The feeding group community is really good about helping each other out,” said Beth Stanley of San Francisco, who runs a local “tubie” family support group on Facebook and has a 7-year-old son who uses a G tube. When people have extra formula, she will pick it up to pass along to someone else who is in need.

“All tubie parents have had to hustle to get what they need, our family included,” she said. “But I’m not sure if the public understands how much the formula shortage impacts medically complex children.”

© 2022 San Francisco Chronicle
Distributed by Tribune Content Agency, LLC

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.