A toddler’s journey in a pediatric feeding program

Bryleigh Phillips
Bryleigh Phillips (Photo by Jessica Marie)

Please note, Our Children’s House at Baylor is now a part of Children’s Health. For more information visit Childrens.com or call 844.4Childrens.

Jennifer Phillips couldn’t hold back the tears as her 2-year-old daughter, Bryleigh, did something that comes so easily to most children. She took a small bite of a rainbow-striped ice pop.

The frozen treat was new for the toddler who, with the help of a feeding program at Our Children’s House at Baylor Dallas (OCH), had begun to take food by mouth for the first time in her short life.

When Jennifer was offered the treat while at another patient’s birthday celebration, she said her immediate reaction was to turn it down.

“Oh no, she doesn’t eat,” she thought.

“However, I recanted and accepted it to simply offer it to the baby,” she said.

To Jennifer’s surprise, her daughter began eating the icy treat.

“Explore."

“I was overcome by emotion,” she said. “I began crying and looking around at everyone and anyone to see if they noticed that my baby was eating! They were tears of joy for something that most parents do not think twice about.”

Bryleigh has come a long way since her early entry into the world. About the size of an orange and considered a “micro-preemie,” she was born at just 24 weeks and weighed one pound, one ounce. With tiny, undeveloped lungs, Bryleigh used a ventilator for the first six weeks of her life and did not learn the suck-swallow-breathe pattern that most babies do. When children miss that window, it is a significant problem.

When Bryleigh finally learned to pull in liquid when she was three months old, they tried a bottle, but she kept inhaling the formula. Physicians then moved to a feeding tube, which she continues to use, although a little less each day.

“The feeding program has opened a new world of eating to my baby that I have only dreamed of,” the Royse City mother said. “She began the program with basically no awareness of the purpose of her mouth. We are amazed at her progress, and for the first time in her life feel hopeful that she will be an eater one day.”

The unique feeding program at OCH is for children like Bryleigh who have physical or behavioral problems that make it hard to eat solid foods or swallow. The goal is to teach them to eat and drink as independently as possible and turn mealtime from a struggle into a positive experience.

Symptoms of feeding problems include:

  •  Being dependent upon nasogastric or gastrotomy tube feedings
  •  Refusing nipple and/or gagging with insertion of bottle
  •  Taking longer than 30 minutes to take a bottle
  •  Only taking a bottle when sleeping
  •  Having difficulty chewing and/or swallowing food
  •  Gagging, coughing or vomiting when eating
  •  Refusing to eat or drink
  •  Eating a limited variety of foods
  •  Being unable to transition to foods that are different textures
  •  Displaying disruptive mealtime behaviors
  •  Failing to gain weight or being slow to gain weight

Driven by a team approach, the doctors, therapists, psychologists and dietitians at OCH work together to help children develop improved eating skills. They place equal emphasis on addressing the child’s unique oral-motor, sensory and behavioral needs.

For instance, speech therapists examine oral strength and coordination. They make suggestions for techniques to make feeding easier. Occupational therapists help calm babies who have sensory issues, and parents receive extensive training on how to continue a successful feeding plan after discharge.

Bryleigh started the feeding program as a day patient in April and was soon taking in a half-ounce of juice and a half-ounce of baby food each day. She made such positive progress that the therapists felt she would benefit from the more intensive 30-day inpatient program, which she completed in late July. Now she continues her therapy as an outpatient at a satellite facility and at home with her parents, who work to reinforce the new behaviors.

As of early August, Bryleigh was 60 percent pump-free, which means she is eating and drinking her nourishment during the day and getting only one three-hour tube feeding while she sleeps.

“That is a huge accomplishment,” Jennifer said. “We had been feeding her with the pump like a newborn baby every four hours for two years.”

Bryleigh also recently landed on the growth chart for a typical 2 year old.

“She’s on the bottom of the chart, but she’s on there,” Jennifer said with a laugh.

Please note, Our Children’s House at Baylor is now a part of Children’s Health. For more information visit Childrens.com or call 844.4Childrens.

About the author

Kristine Hughes
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Kristine Hughes is the former research communications coordinator for Baylor Scott & White Research Institute. Before Baylor Scott & White, she was an award-winning print media journalist for more than 20 years.

2 thoughts on “A toddler’s journey in a pediatric feeding program”

  1. Hey we know these folks! CONGRATS!!! It’s is a great feeling to see them have an interest in food! My granddaughter was also a micro preemie weighing 15 ounces born at Baylor Grapevine she spent the first seven months of her life in the hospital she has been a patient at OCH four times now 2 outpatient and 2 inpatient. She will be five on 10/1 and is eating puree’s thanks to OCH we are on our way to hopefully getting weaned off her g tube very soon!

  2. This is an amazing story about an amazingly patient family. 2 years of struggle that ended with a simple popsicle. I love it!

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A toddler’s journey in a pediatric feeding program