— For seven months, 14-year-old Gentrie Hansen was constantly starving — but she couldn’t eat or drink a thing.
As Gentrie’s weight dropped to a dangerously low 82 pounds on her 5-foot-7-inch frame, doctors and even some family members told her parents that their beautiful, happy daughter had an eating disorder.
One psychiatrist, also suspecting an eating disorder, told Gentrie she’d get a reward every time she ate — but it wasn’t that easy.
Gentrie insisted that she wanted to eat — the tempting smells of family dinners sent her running to her room in tears — but a bite of food or sip of liquid would instantly make her throw up.
“It was really crushing, because I would gladly take some weight and then be healthy and be happy,” Gentrie told TODAY. “That was probably the worst part of this whole sickness, having people keep telling me that you have an eating disorder, and knowing something else was wrong.”
Gentrie spent weeks in and out of hospitals, undergoing dozens of tests and finally, months later, she was diagnosed with gastroparesis, an extremely rare disorder that basically paralyzes the stomach. Gentrie’s stomach was unable to contract and process food, so every time she tried to eat, the food had nowhere to go but back up.
She had to quit dance and cheerleading because she had no energy, and stopped going to school. She was in constant pain, and vomiting 10 to 15 times a day.
Gentrie’s family rallied around her. She’s the youngest of five kids, and family gatherings usually revolved around big meals. Once her parents realized how much the inability to eat was torturing Gentrie, they hung a “Closed” sign on their kitchen, and the family started going to restaurants and eating cereal and cold sandwiches at home so Gentrie wouldn’t have to smell food cooking that she couldn’t eat.
“As a parent sometimes I even felt abusive, because at the end of the day I’d be thinking, ‘What am I going to have for dinner?’ and then it would occur to me that she hadn’t eaten all day, and her tummy was just as hungry or more so than mine,” Kathy Hansen, Gentrie’s mother, told TODAY.
The day Gentrie was diagnosed was “kind of a happy and sad day,” Kathy Hansen told TODAY’s Ann Curry. “You’re so glad there’s something to go forward with and try to understand, but at the same time you realize it’s a lifelong [disease] without a cure.”
No cure — but there was hope. Gastroparesis this severe is extremely rare in children, and doctors in Gentrie’s home state of Utah didn’t know how to treat her. Kathy Hansen went online to research treatments and found the Nationwide Children’s Hospital in Columbus, Ohio, where doctors could insert a pacemaker into her stomach. The pacemaker acts similarly to a heart pacemaker, sending signals that cause the stomach muscles to contract at the right times so that Gentrie could eat.
Nationwide is one of only a few hospitals in the U.S. that have implanted a pacemaker in the stomach to help with gastroparesis. There was no guarantee it would work, but it was Gentrie’s best shot at eating again. In July, Gentrie underwent surgery to have the pacemaker implanted. As she was prepped for surgery, the teenager asked her doctor, “Can I have KFC root beer when I wake up?”
After a little over a month with the pacemaker, Gentrie can consume things like clear liquids, chicken noodle soup, Popsicles and some fruit. She will need to have the pacemaker for life, and she may never eat the way a normal person does — but she’s getting stronger every day, and it’s a vast improvement over her feeding tube.
Doctors don’t know exactly what causes gastroparesis; the best guess in Gentrie’s case is that some sort of virus hit her and affected the nerves controlling her stomach function. The disorder is rare in adults, occurring in 38 out of every 100,000 women and 10 out of 100,000 men, and it’s even less common among teenagers.
Asked by TODAY’s Ann Curry whether any good had come of her ordeal, Gentrie smiled and said she’s certainly learned what she could survive, physically and emotionally. “I think I’ve grown to be a totally different person,” the teenager said.
“Sounds like you’ve gained resilience,” Curry said.
“Now she needs to gain some weight!” said NBC chief medical editor Dr. Nancy Snyderman. “I know that sounds like an easy thing, but it is hard when you’re really thin. It’s going to be a slow uphill curve for her to get her stomach back to normal with this pacemaker.”
Gentrie is trying. She fulfilled her presurgery wish of eating chili and a potato from fast-food chain Wendy’s.
When asked by Curry how that meal tasted, Gentrie responded with a smile.
“Really good, loved it.”