Pediatric feeding disorders are more prevalent than you may realize. Find out what a PFD is and how we help.
Eating. Yum! Something we all love to do. Something some of us look forward to all day. A lovely meal at a candlelight restaurant with your significant other, sipping on some expensive champagne, indulging in your chosen dish prepared in the best way possible. Or even ordering in from your local favorite restaurant as you sit on the couch after a long day and just relax, watching your favorite show. These are the typical images many of us can identify with as being pleasurable experiences. Food is at the center of almost every celebration in many cultures and we love it!
What is a pediatric feeding disorder?
Can you imagine that pleasure being taken away? What if eating was physically difficult for you? What if you gagged every time you ate, or regurgitated everything? It would be a terrible experience. Sadly, for some children who have a pediatric feeding disorder (PFD) and their caregivers, it is. What is a PFD exactly? According to The Journal of Pediatric Gastroenterology and Nutrition, Goday et al. (2019), there was no universally accepted definition, but, using a World Health Organization (WHO) framework, they define a PFD as “impaired oral intake that is not age-appropriate, and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction” (find the link here). Woo. That’s heavy. Why wasn’t there an agreed upon definition? Because it’s a complex disorder that requires multiple professions coming together, however, each discipline had a definition from its own point of view. There is now a universally accepted definition, thanks to Feeding Matters (find it here). Many children with severe PFD can no longer get enough nutrition orally and need to go on to have a feeding tube (more info here), which brings on a whole new set of challenges.
How does the Pediatric Feeding Disorders Foundation help?
Feeding is an incredibly complex task, it’s the most physically demanding thing newborn infants have to do. It’s something caregivers have to think about multiple times a day and it is neither easy, nor free. That’s where we come in, the Pediatric Feeding Disorders Foundation (PFDF). We are a 501(c)(3) non-profit organization co-founded and led by Brianna Miluk, MS CCC-SLP, CLC in order to help families with this economic and emotional burden. There are so many costs involved that insurance doesn’t cover and the toll it can take on a family is astronomical. Yet, only one study, from 2019, has actually looked extensively at the economic impact PFD can have on a family (the one study). We’re talking about things that most wouldn’t think of, lost time planning and coordinating, travel time to and from appointments, special training of any new caregivers, and more, not to mention that insurance doesn’t always cover things we do think of as being a necessity, like specialized formulas.
In the Feeding Matters study (2019), only 1% of respondents said that PFD is “not a financial burden at all”. Over 79% of respondents had to either quit their jobs, cut back on hours, or turn down promotions in order to take care of a child with a PFD. The added time of going to appointments and coordinating care, the emotional burden, it all adds up.
What’s worse is PFD is more common than you think. According to a nationwide prevalence retrospective study in the Journal of Pediatrics, Kovavic et al. (2020) (here), PFD is more common than some better-known conditions such as autism. The prevalence is somewhere in between 1 in 23 and 1 in 37 for kids under the age of 5 annually (for reference, autism is 1 in 54, autism prevalence). According to a review by Manikam and Perman (2000) (here) 25% of children have some form of a feeding disorder and the number goes significantly up for kids with developmental delays to a staggering 80%. That was in 2000, the number of children with PFD has only gone up (the numbers).
PFDF is looking to take that burden off as many families as possible and has already provided over $8,000 in financial assistance to families and delivered over $3,000 worth of tube feeding supplies, all within the first year!
Leesa and Jasper's Story
One of our most giving supply donors, Leesa, shares her story and experience dealing with a PFD.
“My name is Leesa and I have a son named Jasper. He was born at 34 weeks and very sick. He was born with a grade four IVH brain bleed on the left side of his brain and they told me he wouldn't live to see a year old. When we started to try and feed him with a bottle he wouldn't suck and knowing that babies are born with the suck, swallow, breathing method I thought, “well this shouldn't be hard”. Well, over the course of a few days I was noticing that he wasn't eating and they had to put a NG tube in to feed him
. After starting feeding therapy with him while still in the NICU, it was hard when they told me he may never take a bottle and he would most likely end up with a g-tube in his belly. In my mind, I thought that he was always going to be in the hospital. When I was told he needed a feeding tube it took me two weeks to finally come to the realization that if I wanted him home he needed the feeding tube and that is when I finally said “yes.”
When Jasper was getting his surgery done I was an emotional wreck. It definitely put a toll on the family when I told them that Jasper was needing a feeding tube. Nobody wanted to hold him because they were too scared and it got to the point I had to pull him from daycare. We had to plan everything around his feeding time because he was getting fed
every 3 hours.
When Jasper came home from the hospital, it was so hard to find a good feeding therapist like Brianna (Bri) Miluk. Jasper was on a six month wait list with Earthshine Speech and Language. When Bri started therapy with Jasper, it took him 3 months to start eating thickened purees. It took him 6 months to start drinking out of a straw and even though it was just a small amount a day, it was still a huge achievement for him and our family! When Jasper was weaning off his tube, he went from every 3 hours to every 4 to 6 hours to eventually taking everything by mouth and getting his tube out! I loved learning all the new things about the tube but it did take a lot to get to where he is now at almost 2 years old and only a pound away from where he is supposed to be on the charts.”
Leesa and her two year old son, Jasper, went on to donate formula and feeding tube supplies after Jasper completed his tube wean. Let me repeat that, completed his tube wean. That is a monumental occasion and one many families hope to achieve. Sadly, not everyone gets that moment. But with the help of a wonderful feeding therapist, which is hard to come by as it is, they were able to get to where they wanted. We want to see more families in the same position. Click here to find out how you can help or here if you are in need of support.
Until next time,
Asya Krengauz, MS, CCC-SLP