Next Doors: Starving for Answers

Brandon, Paula & Penny Benzing

Feeding Matters breaks new ground in pediatric feeding disorders

            We all love to eat, right? It’s one of the simplest and most basic things we do as human beings. When we’re hungry, we find food. Sometimes we find too much food. We enjoy going to restaurants, or cooking at home, or pigging out on junk food.

            Some kids are picky eaters — my son was infuriatingly fussy about food when he was a baby. But he eventually ate, and when most people hear about picky eating, they fall into old parenting sayings. “They’ll eat when they’re hungry,” or “When I was a kid we ate whatever we had and didn’t complain.”

            But for some children, it’s not that simple. Especially ones that are born premature or face health challenges early on. Those challenges can manifest themselves in very serious problems when it comes to nutrition.

            Imagine if — for physical or psychological reasons — it physically caused discomfort to consume food. Maybe your stomach couldn’t process it, or your senses had a powerfully adverse reaction to putting food in your mouth. Imagine what a challenge that would be. And imagine how that could affect the growth of a young child.

            There’s a name for this condition now, thanks to a Valley-based nonprofit that has broken new ground in the medical field and gotten severe feeding issues on the radar. It’s pediatric feeding disorder, and it’s becoming a treatable diagnosis due to the hard work of Feeding Matters.

            Feeding Matters started in 2006, after Shannon and Bob Goldwater had triplets that were born 14 weeks premature. Even after being released from the hospital, each child would eventually require a feeding tube to eat. The Goldwaters soon found that there was a shortage of quality information on how to deal with childhood feeding. So after their experience, they founded what was then called the Parent Organized Partnerships Supporting Infants and Children Learning to Eat (P.O.P.S.I.C.L.E.) Center, and was (wisely) rebranded to become Feeding Matters in 2013.

            Chris Linn, Feeding Matters’ president and chief executive officer, went through a similar experience with her daughter.

            “You get faced with ‘They’ll eat when they’re hungry,’ and you end up so stressed out that it affects your child,” Linn said. “When we started to go through this, the problems for kids were not identified at the onset, and it wasn’t until we were desperate — I went to the emergency room and said I wasn’t leaving until someone helped me — that we were able to get a feeding tube inserted. It’s a fragmented system of care, and no one was looking at her holistically.”

            Feeding Matters supports families that are going through such struggles, which is an essential part of their work. But the organization has also embraced a critical advocacy role, because there was no diagnosis for these problems in the past. So, Feeding Matters worked to educate the medical community and establish an umbrella under which kids can be treated by creating an actual medical diagnosis that allows doctors to develop a treatment plan. Pediatric feeding disorder was officially recognized recently in a peer-reviewed paper funded by the organization and published in the Journal of Pediatric Gastroenterology and Nutrition, a key milestone in public education efforts.

            Now, the focus is turning to the medical system itself, and making sure, for example, that insurance carriers recognize pediatric feeding disorder and fully cover any corrective steps that are necessary.

            “It’s like where autism was 40 or 50 years ago,” Linn said. “The parents were blamed. They were called refrigerator moms because they were supposedly so cold to kids that they could not function socially. In today’s world, so often people say you need to be more strict with your kids. This disease used to be called failure to thrive, reflux, you name it. Now we have a standalone diagnosis.”

            But it’s the work in supporting families that has a day-to-day impact. Brandon Benzing and his wife Paula’s daughter Penny was born 12 weeks premature. They had previously had a son who was delivered prematurely as well and thought they knew what to expect until food started becoming a serious problem.

            “Everything followed the same path except feeding,” Brandon said. “It never quite worked out. She never picked up on eating from a bottle, never would take a pacifier, and when we did get her to drink from a bottle, she became heavily aspirated. Our son is now 10, and he eventually was fine, and we expected similar results with her, but it never materialized. We always had issues.”

Confused and frustrated, Paula Benzing finally found Feeding Matters online and reached out.

            “We got a call the next day from another mom with a very similar situation,” Brandon said. “She let Paula talk for a good hour and a half. It was very therapeutic for her to have someone listen who understood.

            “We felt like we were flying blind. We had lots of family and lots of relatives who gave excellent emotional support, but there was a lot of ‘You can just not feed her and she’ll be hungry and she’ll eat, so she’ll eventually figure it out.’ It wasn’t until we reached out to Feeding Matters that we had help from people with similar experiences.”

            Penny is now 3, and she’s making steady progress, which the Benzings say is due in no small part to the support they have received.

            “The biggest thing that happened is that she’ll now ask for something to eat, ask for a snack, which she never asked before,” Brandon said. “She’s frequently asking for snacks or water. You give her something to taste, she’ll ask for more.”

            Feeding Matters is one of just a handful of organizations nationwide addressing pediatric feeding, and Linn said that they will continue to support as many families as possible and expand public awareness so that something most people think is simple can be fully appreciated.

            “For all of us, there’s so much celebration around food and the bonding and joy that comes from it — but for some families, gathering around food is not joyful,” she said. “It’s painful and stressful. And I think all of us should remember and not take it for granted.”

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About Tom Evans

Tom Evans is Contributing Editor of Frontdoors Media and a partner at ON Advertising in Phoenix.
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