[00:00:00] Speaker A: Presented by feeding matters with host Jacqueline Peterson and doctor Haley Esstrom.
[00:00:09] Speaker B: Feeding does matter.
[00:00:12] Speaker C: Feeding matters understands that many families face significant financial difficulty due to the high costs of treating pediatric feeding disorder and the overall lack of insurance coverage. Each fall, we open the Family assistance program.
Since 2019, we have awarded $30,000 to families throughout the United States. Applications for the 2024 cycle are currently being accepted and are due by Friday, October 11. Feeding matters will award $1,000 grants to ten families.
Learn more and apply
[email protected].
family assistance that's feedingmatters.org family assistance. Email infoceedingmatters.org with any questions.
[00:01:04] Speaker B: Hello. Welcome to Feeding does matter. My name is Jacqueline Peterson. I'm CEO of Feeding Matters, and I am joined by doctor Haley Estrum, who is a longtime volunteer and supporter and clinician and professional in the field, as well as a dear colleague and friend. So, Haley, welcome.
[00:01:27] Speaker A: Thank you, Jacqueline.
[00:01:29] Speaker B: Maybe to start, since this is our first episode, tell us a little bit about your story and what got you here today.
Big loaded question. I know it started a little while ago, right?
[00:01:47] Speaker A: So my oldest child, Alex, he was born on September 6, 2000.
No, September 11, 2006. Wow. Check me out.
And so he was born a small, for sort of stational age, and he was always really difficult to feed, and we had already had a difficult pregnancy anyway, so we were always chasing him around with a bottle, doing everything I could to get a couple ounces into him. It started out with doing everything I could to get half an ounce, but anyway, difficult to feed.
And we later found out that he has a rare chromosome disorder, and he was missing developmental milestones and things like that.
Above all, though, for the rare chromosome disorder and everything else he had going on, what stood out was that the feeding, that's what mattered day to day.
[00:03:20] Speaker B: You know, several times a day.
[00:03:23] Speaker A: Several times a day. So also at the same time that he was born, and I found out, honestly, that when I found out I was expecting to have him, I was enrolled in a family nurse practitioner program. And so when he was born and he ended up needing all these therapies and was an early intervention, I needed to change tracks because it was just too many appointments. So when I switched nurse educator track, because I'm a nurse.
[00:03:56] Speaker B: Yeah.
[00:03:57] Speaker A: And I was actually in adult critical care at that time.
I ended up switching to nurse education and then ended up going in to get a PhD because I was like, you know, this is really just very difficult, and how can we stop it being so that families have to reinvent the wheel every time, because it's just so difficult for feeding, for all this care that people have to figure out as they go along.
So Alex ended up getting a feeding tube at the age of one and a half, and he still has one today, where we went from being afraid of the tube and very hesitant. Hesitant to get that to being very grateful for it, like, when he has illnesses and things like that. And we can see now that it can be a bridge to better opportunities for eating.
[00:04:57] Speaker B: Yeah, definitely life saving in that sense.
[00:05:00] Speaker A: Yeah. We wish that we had been able.
[00:05:03] Speaker C: To see it in that way earlier.
[00:05:05] Speaker A: On, that it could have been, like, a missed opportunity.
Alex, he loves his tummy food. He just turned 18.
[00:05:17] Speaker B: Amazing. Yeah.
[00:05:19] Speaker A: And so I.
[00:05:21] Speaker B: Now.
[00:05:23] Speaker A: Yeah. Now my career is all about doing research to help families better manage care for their children with pediatric feeding disorder.
A little bit of food allergy and things in there, too.
[00:05:37] Speaker B: So, yeah, you've done so much to really take your personal experience and put it into the research and make sure that, like, the research is expressing what families are experiencing, because I feel like that was a gap in the research that you realized and made a vast change for that. I think so many people have followed to make sure that families are more present in their experiences, are more present in the research.
[00:06:08] Speaker A: Thanks. I mean, I know that there's still a really long way to go, but one of the things that we're working on together with the family centered PFD research consortium, and for those that don't know or that are new to this podcast and to this world, PFD stands for pediatric feeding disorder. And we'll go into it in a little bit, but we're working on together is this consortium, and it's a project where we've brought together these 20 individuals.
[00:06:40] Speaker B: Yeah. So it's around 20 individuals. And, you know, Hayley was really good about saying how we need to look at the research in a different way. And her career is a testament to that. Her personal experience is a testament to that. And so, as we were trying to figure out how this seating matters, make sure that the family voice is a part of that conversation, that's how we had the idea of building this consortium together. And so it became a passion brain project for Haley and I to start, and then we were grateful enough to be funded by PCORI, which is a nonprofit organization that supports patient centered outcomes research. They gave us a contract to launch the consortium, and so we are in the process of building a consortium of members of parents of children with pediatric feeding disorder, and even parents of children with avoidant restrictive food intake disorder in Arpid. So we will talk about both of those on this podcast.
And then this consortium also has adults and their own lived experience, because it's important to not only listen to the family's voice, but patients have a different voice. And so how can we understand their experience as well? And so, you know, we were doing training for this, and part of our consortium setup and building our consortium was, how do we help them learn about where PFD and ARfid have come from and where the state of the research is right now, today? And so, as we start doing this, we were like, there are probably so many people that might be interested in hearing these perspectives. We will have great interviews with experts, talking about the research, talking about the diagnoses, and figured we could leverage that content and share it with more people. So that's kind of how we found ourselves to this feeding does matter podcast.
Hailey. And, I mean, you and I have talked about this like, we're nothing necessarily, like, primed for podcasting, so we will find our way in this world. But we do believe that the content that we have to share and the focus on family centered research is important.
It's a gap currently, and I think it's a gap in the way that we know that there is so much that needs to be done in this field and in combining the PFD and arfid fields and listening to families and patients. And I feel like if we can share more about what's happening, then families can be a part of the work with us, and patients can be a part of the work with us.
[00:09:18] Speaker A: Exactly. Can you tell us more about yourself and why feeding matters and feeding matters CEO might be?
[00:09:26] Speaker B: Yeah, I can an excellent.
[00:09:29] Speaker A: Yeah.
[00:09:32] Speaker B: My story actually starts on the professional side, and so my background is in nonprofit management, and then healthcare innovation and systems practice is my graduate work. And I found myself coming to feeding matters in 2013 when feeding matters had changed its name from Popsicle center to feeding matters.
And Popsicle center was parent organized partnerships supporting infants and children learning to eat. And so I feel like anyone that can tell me that acronym always wins a little award, but we did feel like that name wouldn't help some of our advocacy efforts. So the name feeding matters was really important. And so I joined the team as the name change happened, I was in charge of our grant writing and our volunteer coordination, which meant that I also supported our power of two parent to parent support program. And so that was my first exposure to pediatric feeding disorder, which then we kind of called by many different names, feeding problems, eating disorders, feeding struggles, and hearing the family's experiences on the phone and through email and their messages, and then trying to connect them with someone who had been through something similar to them that could help support them in their journey was a quick lesson in the gravity of PFD and how it impacts the entire family.
And so I just fell in love with our mission and the work that we were trying to do, because not only were we trying to support families on the phone in that moment, but we were also trying to help educate professionals who were also floundering and trying to figure out how to support families and then fixing a system that we knew that parents were faced with when they were struggling at first. And so that's kind of how I fell in love with feeding matters mission. And I quickly kept doing more and more things at the organization. I did our conferences, I oversaw our programs and initiatives, and then I found myself as CEO during the pandemic. And that was when I had a seven month at home, seven month old at home, Charlie. And Charlie, he taught me a lot about just feeding development and typical feeding development.
He taught me that as parents, we are inundated with a lot of information, and so it can be hard for us to identify when there is a problem and when we need to intervene in feeding, because we don't even know what it's supposed to look like. We're hearing one thing from our pediatrician and then another thing from social media, and then just the pressure of being a parent. And so that was Charlie, and he is now about to turn five. And so I always tell people that he taught me about the importance of our awareness and what we need to do for PFD, and then fast forward a few years. I then had George, who is about to turn two years old, and he struggled with feeding right away. And he taught me another lesson in the feeding world, and that was that even though I have been in this world for ten plus years, I still had trouble advocating and articulating to my pediatrician what was going wrong. And so I think that he, you know, he had some anatomical challenges. He also had a cow's milk protein allergy, but all of it shows up as he doesn't like feeding. And so you're trying to get or fake him being able to get some ounces in. And so it's that constant calculation. And so he taught me that, like, as much as we can advocate and as much as parents are leading this, we really need to make sure that it's not parents identifying PFD at the start. And so I think for both of them, they have taught me a lot about feeding and have just made me just so incredibly supportive of what feeding matters is trying to do. So that's a little bit about my story. And so I, you know, I hesitate whether I, like, present as a. As a parent with lived experience, but I do think I do it. Just every parent's experience is different. And you try not to compare your experience to other family's experience and dismiss any of those feelings that come up when that is the case. The comparative suffering, I think, is a lot of times what families experience when they hear other family stories. And so that's what I try to remind myself of. But I know that every day at feny matters, I'm fighting for all of our families and all of our experiences. So, yeah, so that's my story, but that's what led me here, and I have just been so excited to do this work with you, Haley. And we've got some great interviews in this podcast.
So let's talk about, like, more what we want this podcast to be for other people, for those that are listening. What do you hope people learn from it?
[00:14:34] Speaker A: I hope they learn more in depth what PFD is, or pediatric feeding disorder really is. I know that, like, for me, I learned more what qualifies for the medical part of pediatric feeding disorder. So I think, you know, I think that even if you do think you have a good understanding of some things, you could still learn something.
And if you, you know, if you're not very familiar with it, there's a lot to learn. So it's. It's really nice and interesting. There's also some nice information about the overlap between pediatric feeding disorder and arfid or avoidant restrictive food intake disorder. What else do you think?
[00:15:19] Speaker B: I also like that each episode, we're asking people, and our people that we're interviewing, what are the barriers to family centered research and how can we overcome them? Because I think it's a question that we need to continuously ask.
This is not static. The reason that we are being kind of thrust into this world of sharing research in this way is because it isn't static. We need to keep asking questions and keep learning and keep evolving.
And that's what we've done at feeding matters with PFD and Arfid is, you know, I think several years ago, I was almost pretty anti Arfid, but it's just because I didn't understand. And if we're an organization that's here for all families. We need to make sure that we are a part of the solution.
And so a big piece to all of this is asking those questions and making sure families are part of the answers. So, Hailey, we've already done a few interviews and we need to do a few more, but who are we interviewing in this podcast and in our series? And what do you think people can look forward to in those interviews?
[00:16:29] Speaker A: I mean, we're interviewing experts in the field.
We're talking to people in the different domains of PFD, and we're talking to people from representing Arfid, but we're also talking to some people from our consortium, the family centered PFD consortium. So that's people that have experience with the condition. So that's our experiential experts. And that's really very exciting. So there are people that are either caregivers for those with PFD or Arafid, or they've had those conditions themselves.
[00:17:09] Speaker B: Feeding Matters proudly announces its second annual feed the cause in Arizona, signature events supporting pediatric feeding disorder. Join us November 7 from 530 to 08:30 p.m. at Papago Golf Club for an unforgettable night. We are pleased to have Katherine Anaiah as our emcee, a three time Emmy award winning journalist, a former television news anchor for 25 years, and currently host of Horizonte on Arizona PBS experience live cooking demos from chefs Roberto Centeno of Baconera Esperuto, Don Milani of the Wild Chickpea, Julie Moreno of Jules Bakery, and Katie Merwin of Sensory cooking. Guests will enjoy the beautiful sounds of the Natalie Gulleton Jazz trio, a cozy, chic atmosphere and the joy of making a difference. And you'll have a chance to win big in our silent auction, including treasures and experiences from all over Arizona. All funds raised at the feed the cause event enables feeding matters to expand our programs and to continue to support families and healthcare professionals. Learn
[email protected] feedthecause that's feedingmatters.org feed the USDA. See you there.
Giving a voice to those with experience and lived experience and then marrying that with researchers is what we hope is a benefit to not only the consortium, but also to sharing about this work on this podcast. And so again, this podcast is feeding does matter. The series that we will be launching is it's not picky eating, just to take a deep dive into what PFd is, what Arfid is, and kind of a general overview about how it's not picky eating, but it's something more and I hope you join us in learning more and follow this journey along with us. We would love your feedback as always, and please subscribe and listen along. We'll see you on the next episode. Thanks, everyone.
[00:19:23] Speaker C: When supporting a loved one with feeding differences, it's easy to feel like you are alone at feeding matters. Our hope is for you to find the community resources and support that you need through our power of two parent to parent mentoring program, parents in need of support are matched with one of our volunteer family coaches who have lived experience with their own child and can offer emotional support, resources and guidance to lessen the isolation that families face with pediatric feeding disorder or PFD, as well as avoidant restrictive food intake disorder or ARFID.
Families can request a one time phone call or a three month or six month match by filling out the request form on our website. A family coach will make contact via email first and then by phone or text message, typically within two to three days. For more information, please contact us at 242-5234 Extension 306, or email at
[email protected].
[00:20:35] Speaker A: You are not alone.
