From NICU to Miso Soup

BETHLEHEM, Pa. — Charlotte Breuninger’s life began with an early arrival.

Born at just 29 weeks due to her mother’s severe preeclampsia, Charlotte weighed a little over 2 lbs. In the NICU, she amazed her care team by regulating her body temperature and breathing on her own, but feeding quickly became her greatest challenge.

Doctors and nurses worked tirelessly to transition her from a feeding tube to a bottle, with only limited success. Just as she began to make progress, complications struck. At 6 weeks old, Charlotte developed necrotizing enterocolitis, a serious intestinal condition.

She transferred to Nemours Children’s Hospital, where she avoided surgery but had to spend two weeks unable to eat, letting her belly heal. Ninety days later, well past her original due date, Charlotte finally came home — still medically fragile and relying on a nasogastric (NG) tube for medicines, supplements and whatever food Charlotte did not finish by mouth.

Intensive Feeding Program

At home, her parents, Samantha and Carl, managed every drop of nutrition she took in, and it was all consuming. By 6 months, Charlotte gained enough strength to eat on her own, and her care team removed the NG tube. But life was anything but easy. Severe reflux made every feeding a battle. A single bottle could take three hours, only to end in projectile vomiting. Baby food and solid foods didn’t interest her; even special formulas made her sick.

The daily struggle to feed her stretched on for a year. When Charlotte caught a simple cold at 18 months old, she stopped eating and drinking. She was hospitalized, dehydrated and once again sent home with an NG tube for all nutrition — this time for more than a year. Each attempt to move forward met setbacks. Outpatient therapies and special formulas failed to bring lasting progress. Her care team began recommending a permanent gastrostomy tube.

Charlotte’s parents refused to give up. Samantha, who is an occupational therapist, searched for alternatives, landing on the idea of an intensive feeding program. After long waiting lists and a few dead ends, they found Good Shepherd Rehabilitation Hospital Pediatric Unit in Bethlehem, an hour’s drive from their home in southeastern Pennsylvania.

In preparation, Good Shepherd helped the family with everything from setting up the evaluation and admission to getting authorization from a variety of insurances and guiding mom through FMLA so she could be with her daughter.

Building Sustainable Eating Habits

In early 2024, just shy of her 3^rd birthday, Charlotte and her parents committed to a five-week inpatient program at Good Shepherd. The goal? Transition her off the tube feeding and build sustainable eating habits.

The experience at Good Shepherd’s Pediatric Unit, while challenging, was transformative.  Samantha remained with Charlotte during the entire inpatient stay. 

Occupational therapy helped Charlotte desensitize to textures and discover new foods. Speech therapy strengthened her oral motor skills and stamina so she could finish meals without exhaustion. Physical therapy worked on her core strength so she could sit upright long enough to eat. 

Nutrition encouraged Charlotte’s parents to focus on any food she would accept, postponing worries about variety or nutrition until she built confidence. By the end of her stay, Charlotte ate enough that the care team removed her NG tube.

The team at Good Shepherd helped Charlotte beyond feeding therapy. Occupational therapist Amy Rau noticed subtle vision issues and suggested Charlotte be evaluated by a pediatric optometrist. Within a month of returning home, she received glasses that dramatically improved her comfort and coordination. 

Recreational therapists helped Charlotte smile, play and just be a kid. Kimberly Kuchinski, MD, MPH, served an instrumental role throughout the inpatient stay, Samantha said, even moving discharge up a few days so Charlotte and Samantha could finally rest in their own beds.

In fact, the family arrived home just a few weeks before Charlotte’s 3^rd birthday.

“Every parent dreams of the big 1^st birthday party and watching their child smash and eat cake, but we never got that experience,” Samantha said. “On her 3^rd birthday, we finally got to see Charlotte eat cake. It was a plain pound cake, but a win is a win.”

Eating and Thriving

Today, at 4 ½ years old, Charlotte thrives in pre-kindergarten. She eats pizza, meatballs and salmon. She even enjoys miso soup at a hibachi restaurant. From eating just a handful of “safe” foods, Charlotte now continues to explore new foods.

Looking back, Samantha says the experience at Good Shepherd was hard for their family but absolutely worth it.

“The care team at Good Shepherd was lifesaving,” Samantha said. “They gave us our daughter’s future and taught us how to keep moving forward.”