SPARTANBURG, S.C. – At dinner time, Michaela Shelley doesn’t fill a plate with meats and vegetables. Instead, the 14-year-old grabs a white, milky substance from the kitchen counter.
“I wish I could eat everything everyone else eats,” Michaela said.
But with her food allergies, she can’t.
A food allergy is an abnormal immune response to a certain food that the body reacts to as harmful, according to the federal Centers for Disease Control and Prevention. An estimated 4 percent to 6 percent of U.S. children younger than 18 have food allergies. However, Michaela’s allergies are so severe that the only foods she can eat safely without a reaction are bananas and lemons.
So for her meal, each day, she has to eat an elemental formula consisting of broken down amino acids. She needs 11⁄2 to 2 liters of the formula each day to receive the nutrients needed to survive.
But when she first got put on the formula a few months ago, she realized she wouldn’t be able to drink it.
“It tastes like dirt,” she said.
She decided her only option was to get a feeding tube surgically attached to her stomach.
“At least with the feeding tube, I don’t have to taste it,” she said.
Across the living room from where Michaela sat on a recent Tuesday, her friend Merce’des Lancaster said comparing dirt to the formula was inaccurate.
“Dirt actually tastes better than the formula,” she said with a laugh. “You can at least swallow dirt.”
About 345,000 people in the United States rely on feeding tubes, the Feeding Tube Awareness Foundation said.
Feeding tube use is increasingly common among those with very significant food allergies because the formula they have to eat is unpalatable, said Dr. Jonathan Markowitz, Michaela’s doctor and a pediatric gastroenterologist at Children Hospital in Greenville, S.C. Severe allergic diseases tend to affect 10 people per 100,000, he said; recent estimates put the number even higher.
Michaela initially had a feeding tube attached to her face. It threaded through one nostril, down the back of the throat, into the esophagus and into the stomach.
But on Feb. 4, she had a gastrostomy, an operation to implant a gastric tube in her stomach, which she said is far more comfortable and less noticeable.
Merce’des has a lot in common with Michaela. She also is 14, only can eat specific formula and uses a feeding tube.
The two met shortly after Michaela and her family moved to Spartanburg about two years ago.
Amy Shelley, Michaela’s mother, turned to Facebook and other social media sites to try and find others in the community who use feeding tubes.
“There’s a couple of us in the community, and we are getting to know more and more. And Facebook has been a huge help,” Annie Shelley said.
Unlike Michaela, Merce’des uses her tube because of a severe food allergy called eosinophilic esophagitis, or EOE. Eeosinophils, a type of white blood cell, build up in the esophagus as a reaction to foods, allergens or acid reflux. Eosinophils can inflame or injure the esophageal tissue, according to the Mayo Clinic.
Eosinophilic esophagitis disease, while rare, is increasing in prevalence. It affects an estimated 1 out of every 2,000 children.
Earlier this year, while Merce’des and Michaela were studying for school, they decided to help others understand feeding tubes. For Feeding Tube Awareness Week, which ran from Feb. 10 to 16, the two friends decided to record a video with a strong message. In the video, the girls take turns holding up information about their conditions and the feeding tubes.
“We want to show the world that feeding tubes aren’t scary,” Michaela said. “We can do anything the rest of the world can do.”