Girl with rare disorder highlights those overlooked in formula shortage

Morgan Furhman has Robert’s Syndrome, and she needs a specialized formula in order to survive.
Published: May. 30, 2022 at 9:16 PM EDT
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CINCINNATI (WXIX) - The ongoing national shortage of baby formula is impacting a certain group of people especially hard—kids and adults with special needs.

Loveland mother Kathy Furhman’s daughter is among them.

“It’s a very scary thought when your child’s nutrition is based on this formula, and then it’s recalled, and then you’re like, ‘What do you do?’” Kathy said Monday. “It’s a very scary thing.”

Kathy’s daughter, 14-year-old Morgan Furhman, has Robert’s Syndrome, a rare genetic disorder characterized by growth delays before and after birth. Morgan can’t walk or talk, and she was born with a cleft palate.

“When she was born, they had to trach her, which is one of the reasons she was put on a feeding tube, because for over a year her brain was inside her mouth, so she couldn’t have anything in her mouth at all,” Kathy explained.

Morgan’s specialized formula, EleCare Jr, was recalled in February.

“She’s so small, only being 31 lbs., every calorie counts for her,” Kathy said.

Amy Reed, registered dietician are Cincinnati Children’s Hospital, says it can be challenging to switch formula for any child, let alone those with special needs.

“A lot of these kids have digestive issues, and they’ve had tolerance issues in the past,” Reed said. “So any little change is definitely something to be concerned about.”

Months of spot shortages at pharmacies and supermarkets were worsened in February by a recall at Abbott, which was forced to shutter its largest U.S. formula manufacturing plant due to contamination concerns.

MORE | FDA chief struggles to explain slow response on baby formula

The factory is expected to reopen soon, with production taking around six weeks to ramp up. In the meantime, the Biden Administration has employed the Defense Production Act to increase supplies and is even airlifting supplies from Europe. But supplies remain tight, and six weeks is a long time to be without a prescription formula like Morgan’s.

“We have to have that specialized formula so my kid can live,” Kathy said. “I mean, she has to have it in order to survive, and Morgan’s is just as important as the next person.”

Kathy explains if Morgan were to lose any weight, it would be detrimental to her health.

Said Reed, “So, without their sole source of nutrition, they may have some slow growth or development. The other thing, it provides hydration. So, you don’t want to have dehydration, which could be something that would bring a child into the emergency room or for hospitalization.”

Morgan was able to transition to Neo-Cate Jr, but Kathy says it’s not on backorder as well.

”You want what’s best for your kids, you want to make sure they’re happy and healthy, and when you can’t provide that—to make them happy and healthy—that breaks your heart,” she said.

Kathy says so many parents are at the mercy of formula suppliers, of which there are fewer than five in the United States with Abbott being the largest.

Reed says if anyone is feeling frustration about not being able to get formula, they should reach out to their healthcare provider.

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