A MEASURED APPROACH TO FEEDING

BY ROBIN COOK, MS, RD, CSP, LDN

All parents want their children to eat a healthy, balanced diet to nourish their growing bodies and meet their developmental needs. But for families who have children who can't eat by mouth, it can be a daily struggle to ensure their medically-fragile children receive proper nutrition. Until recently, these families were limited to two feeding options:

• Commercially available formulas that were nutritionally balanced, but limited in ingredient selection

• Real-food, home-based formulas that were time-consuming to create and difficult to ensure contained nutritional adequacy

In March 2020, Children's Hospital of Philadelphia (CHOP) and Nestlé Health Science launched a Blenderized Tube Feeding Recipe Builder web tool that provides an innovative approach to offering whole food-based and nutritionally complete recipes for tube-fed children aged 1 to 13.

The unique, online tool makes it easier for families to give their feedingtube-dependent children real food, under the guidance of a healthcare provider. The project is the culmination of more than eight years of research and fine-tuning at CHOP, partnerships with CHOP's Department of Clinical Nutrition, Office of Entrepreneurship and Innovation, and Technology Transfer, as well as insight from patient families, students at Temple University's Fox School of Business and Nestlé Health Science.

THE EVOLUTION OF TUBE FEEDING

Some children – for a variety of reasons such as gastrointestinal disease, congenital gastrointestinal anomalies, genetic conditions or an inability to swallow – need to receive their nutrition from a feeding tube. Parents of children who may require enteral (direct to the GI tract) nutrition for a long time often opt for a gastrostomy tube, or G-tube, placed directly into their stomach.

Decades ago, it was not unusual for table food to be blended and given to patients though their G-tube. But, as commercially-prepared formulas were introduced that were nutritionally complete, sterile and easily delivered, feeding shifted to giving these formulas to tubefed children of all ages.

About eight years ago, parents at CHOP began expressing interest in moving away from commercially available formulas, and instead giving real food to their tube-fed children in the same way they would for all members of the family.

The challenge was how to make sure children received the correct number of calories and the correct mix of macro- and micronutrients to promote optimal growth and development. So began the creation of a spreadsheet that would act as a road map for families who wanted to give their tube-fed children a homemade, blenderized diet that met their specific nutritional needs, as well for healthcare providers who could support this practice.

While the spreadsheet served the purpose to create nutritionally complete recipes, it was still cumbersome for some families and was limited to clinicians at CHOP. We thought some of the manual steps would be much easier in the form of a web-based application that could be available on a larger scale outside the CHOP community. The idea was brought to our Office of Innovation and Entrepreneurship (OEI) and a chance encounter with patient family led us to our first partnership — with a group of students at Temple University's Fox School of Business.

EXPLORING OPTIONS TO TRANSFORM CONCEPT INTO REALITY

During our initial meeting with the students, OEI and I explained the basics of feeding tubes, enteral nutrition, blenderized tube feeding and CHOP's new-product incubation program and process. The students, completely unfamiliar with medical nutrition therapy, used their technologic skills to bring the idea of a web-based platform to life. After creating digital wire frames, the students turned over their concepts to CHOP's OEI to continue to advance the project.

The wire frames were used to obtain feedback from both CHOP dietitians and families who were using or considering using a blenderized diet for their child. The response was overwhelmingly positive and we began looking for a commercial partner with the resources to build the application and market it widely. Nestlé Health Science, a major organization in enteral feeding and a company who understands and supports parents who want to incorporate more real, recognizable food into their child's diet — regardless of how they eat — was our first point of contact. After months of collaboration, the Blenderized Tube Feeding Recipe Builder was launched. The Recipe Builder helps eliminate some of the trial and error that families experienced when the spreadsheet was their only resource. It helps families optimize nutrition and calories for children who may be only able to tolerate limited volumes per feed. Though still timeintensive for families, the website streamlines the decision-making and calculating, while preserving the intent to provide individualized food blends. And, families — no matter where they live or if they are CHOP patients (add space) — can choose and give a blenderized diet to their child under the guidance of a healthcare professional

The Recipe Builder can be customized to each child's unique needs, including calories, volume limitations and allergies. It contains numerous features, including the ability to save recipes and meal plans for up to seven days, print or email shopping lists, and create a summary document containing the child's last recipe (complete with nutritional information), which can then be sent to the child's healthcare team. The tool is available at compleat.com/recipes •

ABOUT THE AUTHOR:

Robin Cook, MS, RD, CSP, LDN, is a registered dietitian in the Department of Clinical Nutrition and Division of Pediatric General, Thoracic and Fetal Surgery at Children's Hospital of Philadelphia.