Living one can at a time: Baby formula shortage hits some families extra hard

Samuel Tebbs is approaching his sixth birthday, but his life hangs in the balance of the nation’s baby formula shortage.

A rare genetic condition makes it impossible for the young boy to digest normal food, leaving him dependent on EleCare Jr for his daily sustenance. A product of Abbott Nutrition, the formula is one of those caught up in a nationwide recall after bacterial contamination was detected at the company’s main plant in Michigan.

This story is for subscribers

We offer subscribers exclusive access to our best journalism.
Thank you for your support.

Ali Tebbs, Samuel’s mother, said that she was able to find a substitute that her son is able to tolerate relatively well when delivered through his feeding tube or an oral syringe, but as many have recently learned, the Abbott shutdown has quickly soaked up available supply from other vendors.

Ali Tebbs prepares her son Samuel's formula at the family home in Coronado.

Ali Tebbs prepares her son Samuel’s formula at the family home in Coronado.

(Nelvin C. Cepeda / The San Diego Union-Tribune)

It recently got so bad, she said that she was forced to hunt down a regional sales representative and ask for samples.

“Thankfully, she was able to send three cans for us to be able to feed him for the rest of the month,” Tebbs said. “There have definitely been some close calls, but it has always been provided.

“Samuel is not alone. There are so many sweet, sweet children who are having to go through this. ”

Indeed, the situation has become severe enough that it prompted the county health department to issue a health advisory to San Diego County doctors Friday, asking them to report any medical problems “that may be a result of inadequate infant nutrition secondary to the formula shortage.”

Dr. Kelly Motadel, the county’s child health officer, said that her office has so far found no direct evidence of patient harm connected to the shortage, but concern is growing, especially as stories of women diluting formula, or making their own using recipes found on social media, have surfaced.

Feeding syringes for Samuel are stacked ready for use.

Feeding syringes for Samuel are stacked ready for use. Because Samuel is unable to take any food orally, he is fed through a feeding tube 2-3 a day.

(Nelvin C. Cepeda / The San Diego Union-Tribune)

Formula shelves in retail stores have been empty for weeks, forcing harried parents to apply the same kinds of online searching skills that many used last year to locate scarce doses of coronavirus vaccine.

At the moment, Motadel said, it appears that those searches are usually finding supply somewhere, even if it is only a few cans at a time.

“There are sporadic reports of problems,” Motadel said. “Some pediatricians have told me that their families are concerned, but they haven’t actually experienced not being able to obtain their formula, even if it has not been easy to find.”

The constant searching is trying for the Tebbs family, especially since their son has already had to fight so hard for every moment. Doctors predicted that Samuel would not survive his birth due to a rare genetic disorder called Pentalogy of Cantrell that severely affected his heart and lungs, also causing abdominal muscles to remain unformed.

Her son’s whole life story, Ali Tebbs said, has been improbable struggle, surviving only with the continuous support of a breathing machine, a feeding tube and family members and health care workers who must make sure all systems are maintained and working around the clock.

Ali Tebbs checks on her son, Samuel's feeding tube with his formula.

Ali Tebbs checks on her son, Samuel’s feeding tube with his formula. Samuel is fed through a feeding tube 2-3 a day, and the feedings takes about an hour and his night feedings takes about 10-hours.

(Nelvin C. Cepeda / The San Diego Union-Tribune)

To have his fragile existence threatened by something as simple as a few cans of formula, she said, has been particularly stressful.

“You hate to be so blunt, but it is life or death,” she said. “I can’t just go to the fridge and fill up his milk bag with whole milk, and I think it’s lost on most people how many kids, not just infants, are affected by this shortage.”

While situations like Samuel’s are uncommon, they are far from scarce. Rady Children’s Hospital’s home care program tracks 1,400 kids with specialty formula needs to run its own delivery service, complete with a special warehouse capable of mixing ultra-specific formula recipes prescribed to compensate for the rarest of needs.

An example, said Chris Abe, the hospital’s operations director, are newborns with a metabolic disorder that causes deficiencies of enzymes that produce chemicals necessary for brain and other types of development shortly after birth. Fast genetic sequencing, she said, is now allowing doctors to spot these rare situations quickly enough to change a newborn’s formula, adding ingredients that allow normal development to proceed properly.

Ali Tebbs holds the hand of her son, Samuel, before attaching his feeding tube.

Ali Tebbs holds the hand of her son, Samuel, before attaching his feeding tube. Samuel is fed through a feeding tube 2-3 times a day.

(Nelvin C. Cepeda / The San Diego Union-Tribune)

In such situations, she said, disruptions in the formula supply can quickly turn from inconveniences to significant threats.

“Some of these kids depend on very specific recipes to get all of the elements that they need to sustain life,” Abe said.

And there are many reasons why new mothers, even those who had uneventful pregnancies, now find themselves living lives paced by the need to find yet another can of formula before the current supply runs dry.

Sutoma Choudhury and Saptarshi Sinha arrived in San Diego in January from southern India to take a job at Qualcomm Inc. thinking they had plenty of time before their twins would be born. The due date was not until May 22. But the twins arrived on Feb. 20, much earlier than expected, and an infection during a Caesarian section put Sutoma on high doses of antibiotics, making it impossible for her to nurse.

While their son, Syamantak, remains in the hospital due to a complication that is causing low blood oxygen levels, their daughter, Ishwin, has been home for weeks. She remains on a high-calorie formula made by Infamil, which has become particularly difficult to find, and yet is necessary to make sure that the baby gains weight at an accelerated rate to help her catch up with the growth chart.

Formula shelves are nearly empty at a Target store in Encinitas, CA, on Tuesday, May 17, 2022.

Formula shelves are nearly empty at a Target store in Encinitas, CA, on Tuesday, May 17, 2022.

(Paul Sisson)

Watching grocery store websites, the couple has been able to stockpile a few cans, but the estimate of six to eight weeks until supplies begin to return to normal currently looks a long way off.

“They have given me some alternatives, but those are also not widely available,” Sutoma Choudhury said. “Now, we have some stocked, but this will eventually run out. Then I do what? ”

Getting to the bottom of each can, she said, she scrapes every speck stuck to the bottom.

“Right now, every little gram, it matters, it matters a lot,” she said.

Motadel said she wants parents stuck in this endless cycle of formula scarcity to know that formula companies have developed special programs to help alleviate desperate situations. Before deciding to dilute formula, or use an online recipe to make a concoction from powdered milk and electrolytes – as some have suggested – it’s best, she said, to reach out to a doctor and get some help.

“We don’t want them making their own; we don’t want them using cow’s milk without consulting their physician, if they’re less than a year of age; we don’t want them using alternate protein-based powders or other substitutes, and we want them communicating with their health care provider, ”Motadel said.

The American Academy of Pediatrics has more information available on how to handle the shortage at healthychildren.org.

Leave a Comment