Girl with Feeding Tube Asks for a Miracle

Halloween candy. Thanksgiving pies. Holiday cookies. These are the things a kid waits for all year. But for Aubrey Harris, there was none of that — not even a slice of birthday cake.

From the age of 10, eating solid food had begun to make Aubrey horribly ill. Tests pointed to her gallbladder, and its removal when she was 11 seemed to help, for about a year. Then her symptoms resumed, and worsened. Anytime she would eat, “I was crazy nauseous, in awful pain,” she remembers. She started losing weight.

“It was awful,” recalls her mom, Megan Harris. “We thought we’d found the problem. But it wasn’t the problem.”

No Cause, No Cure

Gastroparesis is a disorder that can cause a near-total shutdown of food moving through the stomach and intestines. It can leave sufferers hooked to feeding tubes, unable to eat normally, possibly forever. It can resolve itself, especially in children, or not. There is no cure.

For Aubrey, it meant a life that never seemed normal. “I would go to school in the morning, eat lunch, get extremely sick, and my mom would have to come pick me up. It was like that every single day.”

Eventually, Aubrey’s intestine stopped working. Her GI in New Port Richey, where the Harrises live, had her do yet another test, this one a gastric-emptying study. “I had to eat radioactive eggs, and they watched my body digest them over a period of four to five hours,” Aubrey says.

Aubrey’s eggs went nowhere. Doctors determined a feeding tube was the only option, although a traumatic one. “They hold you down on a table and slowly shove the tube up your nose,” Aubrey says. “I was terrified.”

The tube kept her alive, but at a cost.

“Since it was taped to my face, everywhere we went, everybody would stare,” Aubrey says. “People would make weird comments, and kids at school would laugh.” Strangers in grocery stores would point or try to touch her face.

She began to notice how much not just the holidays but almost all social events revolve around food. “I felt really deprived of that normalcy, and really isolated,” she says.

“She lost sports, everything,” her mother says. “All of her middle-school years.”

“We thought this was going to be my life forever,” Aubrey adds, “hooked to a bunch of tubes.”

Out of Options

Megan Harris had heard of a gastric pacemaker, a device that electrically stimulates the action that moves food through our systems. But the device was typically implanted only in adults.

When Aubrey was referred at age 12 to Dr. Shaista Safder, a pediatric gastroenterologist with Orlando Health Arnold Palmer Hospital for Children Center for Digestive Health, her family had little reason to believe anything would change.  

Dr. Safder put Aubrey through a variety of trials. None succeeded. “We were hopeless, as far as medical treatments,” Megan says. “And then Dr. Safder walked in one day and said, ‘Aubrey, I’ve been studying gastric pacemakers. And I’m going to get you one.’”

“We all just sobbed,” Megan says.

Filling a Need

Gastric neurostimulators have been around a while, but no hospital system closer than Ohio was approved to use them in children. Dr. Safder, an expert in neurogastrointestinal motility disorders, heard constantly from pediatric patients seeking a device. Today Orlando Health Arnold Palmer Hospital for Children is the only hospital in the Southeast — and one of few nationwide — offering gastric electrical stimulator (GES) placement for kids.

“It’s not really a gastric pacemaker,” Dr. Safder explains. “Unlike a cardiac pacemaker, which is actually squeezing and pacing the muscle, this is neurostimulation. It stimulates the nerve endings and helps with the mechanosensory aspects of what happens when food is delivered into the stomach.”

We thought this was going to be my life forever, hooked to a bunch of tubes.- Aubrey Harris

To make the device available to kids in Orlando, Dr. Safder embarked on a rigorous six-month process that included an institutional review board and special authorization from the FDA. Her effort meant the world to Aubrey, by then 14.

“Seeing Dr. Safder is always like seeing family,” Aubrey says. “She genuinely cares. When she told me she was going to try to get this thing so I could have some normalcy back in my life, it made me feel amazing.”

The next step was to perform a test run. The device would be active but temporarily placed outside Aubrey’s body, giving Dr. Safder a chance to see whether it would work for Aubrey before it was implanted.

“The beauty of the device is, it’s customizable. I have a programmer and I can customize the settings to figure out the right frequency and amplitude to help a particular patient,” Dr. Safder says.

For Aubrey, the monthslong test was successful. So Dr. Safder partnered with Dr. Marc Levy, a pediatric surgeon at Orlando Health Arnold Palmer, to place the device laparoscopically in 2024.

“Patients are so appreciative — they're off their tube feeds, eating normally for the first time in years,” Dr. Safder says. “It’s a life-changing experience for them, and so very gratifying to see.”

Miracle Received

Now 15, Aubrey is thrilled with her new life. “If I lift up my shirt you can see a little bump on my stomach,” she says of the implanted device she’s had for nearly a year now. “It’s kind of cute. Sometimes I draw a little smiley face on it.”

While there are some things she must avoid — induction stoves, some rollercoasters, putting her phone in her pocket, anything with magnets — she’s been surprised by how well the GES works. “The very first day, I could eat way more. I noticed an immediate improvement.”

What is she enjoying most? “Anything egg and cheese,” she says. “Egg and cheese croissant, egg and cheese bagel, egg and cheese English muffin …”

And, at last, she was able to eat her birthday cake. And quite a bit more. “For my birthday I actually got a bunch of desserts, because I just wanted to try everything,” she says.

Other than a battery change — a relatively simple procedure needed every 10 years or so — Aubrey can look forward to a lot more normalcy. Her advice to other families considering a GES? Go for it. “It can be scary not knowing what’s going to happen and what the rest of your life will look like with this little thing inside of you, but it is so worth it,” she says. “It changed my life in so many ways.”

She even has a pet name for her new little friend. “I call it Miracle,” she says. “I asked God for a miracle, and he gave me Dr. Safder.”