Imagine being unable to eat solid foods as you grow up. Imagine being unable to drink certain beverages, or even swallow a few gulps of water.
That’s the daily struggle for 3-year-old Alexis “Lexi” Truax—a struggle that led her family to the Intensive Feeding Program at Spectrum Health Helen DeVos Children’s Hospital.
Lexi is one of only 14 people in the world diagnosed with RARB gene, and she lives with medical issues affecting her lungs, vision and muscle tone. She also has global development delays.
Her feeding problems arose from her longstanding gastroesophageal reflux and from problems controlling her oral and swallowing muscles. These issues delayed her development and ultimately affected her ability to eat and drink.
Her parents, Nick and Sarah Truax, said Lexi’s eating habits were better in her first few months, although at just 3 months old she had to have a G-tube inserted to help her eat. Her oral eating dropped off soon after that, as she became increasingly dependent on the G-tube.
Eventually, she completely lost the ability to eat on her own.
Nick, originally from Grand Rapids, Michigan, had been in the U.S. Marines when Lexi was born in Okinawa, Japan. Her parents struggled with treatment options overseas and they weren’t getting the answers they needed.
After moving to California on a mission to learn more about their daughter’s condition, they found their way to Michigan and eventually to Helen DeVos Children’s Hospital. They now live in Rockford.
Lexi has already had three cornea transplants and more surgeries than most adults will have in a lifetime.
Understandably, her parents felt a sense of urgency to get her eating back on track. That led them to the Intensive Feeding Program at the children’s hospital.
A family affair
It’s called intensive for a reason.
The in-clinic program consists of eight weeks of therapy in which parents and children work with a multidisciplinary treatment team for the majority of each day. With the parents at the child’s side, the instructors teach new eating techniques—opening wide, chewing and swallowing—with an ultimate plan to make normal eating and drinking routine over time.
The program also features a special observation room outfitted with a one-way mirror, where parents can watch as clinical staff help the child learn the feeding techniques. The observation room keeps mom and dad involved in all aspects of the program, while giving children the opportunity to learn without distraction.
Eventually, parents end up on the other side of the glass, feeding their children by using the new techniques they learned. It’s a learning curve for parent and child alike.
Nick and Sarah said the program is necessary—and life-changing—for children like Lexi.
Nick believes Lexi was given to them for a reason.
“If Lexi can help people, even one child, this would be so amazing,” Nick said. “As we learn more about her condition and grow with her, we hope others will learn more, too.”
Lexi is always proud of herself when she takes a big bite or drink. She smiles brightly when she knows she did well.
Sarah said it feels great as a mother to see Lexi growing and progressing—especially since she helped guide her daughter on this journey.
The Truax family considers themselves blessed they can participate in the program, and that they live so close to Helen DeVos Children’s Hospital. Many families in the program have to take time off work or use vacation time, given the need to be on-site during the admission.
It’s important for parents to learn as much as the children.
With each day entailing three treatment sessions, most of the little ones need a nap somewhere along the way. The program goes by quickly for most families, said Nancy Bandstra, PhD, director of the Intensive Feeding Program.
To make families feel as comfortable as possible, Dr. Bandstra’s team works to create a preschool-like environment.
“We have visits from John Ball Zoo, music therapists, and our child life assistant also works hard to keep families busy and children engaged with arts and crafts and other fun activities whenever possible,” Dr. Bandstra said.
“The one-on-one treatment sessions are meant to be therapeutically-challenging, but also positive and structured at the same time to help children learn and integrate new eating behaviors and techniques most effectively.”
When Lexi first arrived, she would only take a small taste of pudding—and even then she’d accept only the tiniest of bites.
After weeks of intensive therapy, she is now drinking more than 4 ounces at a time and eating 1 ounce of food four times a day.
“She’s experimenting with everything right now and all sorts of different flavors and textures,” Nick said. “Pudding is her favorite. And beef stew, too. She’s getting to know her fruits and vegetables slowly but surely.”
Back to basics
The program includes a comprehensive support team for Lexi. It also has someone in the kitchen to teach parents how to prepare and weigh meals.
Patients receive oral motor therapy. They learn to “open wide” and accept increasingly larger sizes of food and drinks. The lessons cover the basics, too—taking little bites, taking drinks and holding a cup.
It can take dozens of exposures to any food before children decide if they like or dislike something, Dr. Bandstra said.
“Our biggest job with families is to set them up with the skills they need to be successful at home mealtimes,” the doctor said. “I have seen so much progress in Lexi in the past several weeks and am very proud of where she and her parents are headed.”
The program also teaches parents how to use toys, music and visual stimulation as positive reinforcement during meals.
Lexi’s parents know she’s a big Taylor Swift fan, so they use the pop star’s music as a method of distraction and positive reinforcement when Lexi bites her food and swallows.
Lexi also finds inspiration from the bright toys that vibrate and make exciting noises.
She graduated from the Intensive Feeding Program in September and is now at home with her family, working on fine-tuning her eating and drinking skills and increasing volumes and constantly adding new foods.
Nick and Sarah said they’re still using all the techniques they learned at the Intensive Feeding Program.
It can be a demanding experience, but the families who complete the program agree it can also be life-changing.
Every two years, the Intensive Feeding Program holds a reunion picnic that gives families a chance to look back and exchange stories. It is also a time for celebration as the Intensive Feeding Program continues its mission of “Empowering families, one bite at a time.”