SOME FAMILIES IN DIRE NEED OF BABY FORMULA
Children with special conditions rely on it as only source of nutrition
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.
Ali Tebbs, Samuel’s mother, said that she was able to find a substitute that her son can 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.
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’s 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 San Diego County’s health department to issue a health advisory to 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.
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 hasn’t 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.
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 such as Samuto el’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 situations quickly enough to change a newborn’s formula, adding ingredients that allow development to proceed properly.
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 Choudhury on high doses of antibiotics, making it impossible for her nurse.
While their son, Syamantak, remains in the hospital due a complication that is causing low bloodoxygen levels, their daughter, Ishwin, has been home for weeks. She remains on a high-calorie formula made by Enfamil, 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.
Watching grocery store websites, the couple have 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,” 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.