[00:00:01] Speaker A: Wouldn't it be great if you could access some of the best sessions from the Feeding Matters International PFD Conference whenever and wherever? Well, good news, you can. Our On Demand conference lets you access key sessions and more on your own time. You'll get high quality recordings of sessions that discuss the intersection of food insecurity and feeding disorders, that explore how a holistic, multi domain view of PFD improves diagnosis and treatment outcomes, that identify actionable steps that will propel the field of PFD forward, and that answer the question, what does success look like during the Shannon Goldwater Summit for Change? All of these amazing on demand offerings and more are available for viewing beginning March 1 through April 30. We have great on demand pricing for families, students and healthcare professionals, including a healthcare professional's group rate. Visit feeding matters.org conference to view the on demand agenda, see available CEUs and register today.
[00:01:07] Speaker B: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
[00:01:17] Speaker C: Feeding Does Matter hello everyone. Welcome back to Feeding Does Matter. I am really just proud to be able to dive into more stories from our members of our consortium. So today we have Heather Gotch, who is a member of our Family Centered PFD Research Consortium, which is a new body within Feeding Matters that is fully dedicated to ensuring that we're building capacity in research. And so they are very focused on family and patient centered research in many different ways. So excited to get into it. Hayley, how are you doing this morning?
[00:02:00] Speaker D: Oh, I'm doing pretty well. And how are you, Jacqueline?
[00:02:04] Speaker C: I'm doing well too.
[00:02:05] Speaker D: Always ask how you're doing.
[00:02:07] Speaker C: I know in the midst of everything, it's always so great to just focus on the work that we do and I always am so inspired in these conversations. So really excited to dive in with Heather. So welcome Heather. Excited to have you. Thank you.
[00:02:23] Speaker B: I'm excited to be here.
[00:02:25] Speaker D: So Heather, I get to ask the first question. Can you share with us just a little bit about yourself and about your child's journey with pediatric feeding disorder?
[00:02:36] Speaker B: Absolutely. My name is Heather Gotch. I have been married to my husband almost seven years. We have two beautiful little girls. I am truly blessed and honored to be a mom. I have loved every minute of it. I think there have been some challenges that I was not really prepared for and so I'm really grateful to be a part of Feeding Matters now to help out with this consortium and be able to really just help other families who are struggling in this area too. So my youngest daughter, she's three and she was diagnosed with pediatric feeding disorder in arfid when she was. She's diagnosed with PFD first when she was, I think, 18 months old.
[00:03:16] Speaker D: And what were the early signs for that?
[00:03:19] Speaker B: So she started having signs at three weeks, actually. And they did some testing and doing that testing was kind of inconclusive just because, again, she was so young.
[00:03:34] Speaker D: But what did you see like that led to the testing.
[00:03:38] Speaker B: She would choke on everything. When she would breastfeed, she just choked over and over again. And then she would vomit anything that she could get down.
So I brought the concerns to our pediatrician at the time and said, hey, something's not right. I can't get her to sleep, I can't get her to eat anything that she like, anything that goes down comes out. And if we get it down, she's choking on it. And I was worried, of course, of aspiration and, you know, just the scarier things happening with that kind of situation. And so at that point it was like, well, she's really young. Let's see what happens. We kind of still had that occur throughout. It wasn't as severe for a little bit. We kind of had a break of like, she was still choked, but it wasn't necessarily the. We weren't holding anything down. And I had, I was, I'm really thankful for the supply that I had because it's what kept her nourished enough to survive and be okay. We didn't have to supplement formula at any time. We just said, okay. Well, then six months hit and it was time to start working on solids. And she would not take any of the. Any purees, nothing. No cereals, no traditional baby food, nothing I made at home. I, you know, used breast milk in it. Thinking that would help, I went to her pediatrician and said, again, I feel like something's wrong with her eating. I don't know what to do here. And he was like, well, maybe she wants, maybe she wants solid. So we tried solid. She didn't want solid solids. I was like very defeated at this point. Had another child who I knew like, this, this isn't normal behavior because my other daughter had done fine. So I was really frustrated. And he's, he was such a laid back physician, which is a really good thing in a lot of areas. But I was so scared and frustrated. And so we ended up switching doctors and the doctor we switched to, by that time she was about 13 months old. And they put us immediately into feeding therapy. And then I went and got a referral through ECI as well. Our ECI program here and they helped and stepped in and so we've been working with them since so.
[00:05:46] Speaker D: And I, I just heard you say like from the six month time period till 13 months, you, it sounds like there was probably a lot of challenge and struggle in there where you were trying.
[00:05:57] Speaker B: Okay, yeah, it was a lot of stress for me trying to, you know. Well, they're saying that it's not that big a deal, but it feels, it felt like a big deal, you know, that, that just something wasn't sitting right and that's no shame to them. They were trying to just help me the best that they could, but I was just so scared and I mean, she didn't sleep, so we spent, we slept in the recliner more nights than we didn't because it was just, she was hungry because anything she was getting down just really was not sitting right. All she could have was milk, breast milk at that point. And so she really just wasn't getting full and it was just, it was a mess.
So that's kind of how, how that's gone. And she's been in feeding therapy and speech ever since. So she's now three years old and we've, we've hit that mark and we've had the same therapist since then and that's been such a blessing to have her walk from that time period to now because there has been improvement. Right. Small, small little victories that are, feel huge. So, so it's really been, it's really been awesome to work with her and move forward.
Yeah.
[00:07:06] Speaker C: Thank you for sharing, Heather.
I know it's, it's hard to cover everything that you've been through in such a short amount of time because there has been so much that you all have endured.
What's been a challenging or even the most challenging part of this experience thus far for you guys?
[00:07:27] Speaker B: That's hard because there's been like you said a lot of things that have been challenging, but I think challenging for me, I'm not very good at advocate. I am, but I'm not very good at advocating because I don't like to push.
[00:07:42] Speaker C: Sure.
[00:07:43] Speaker B: And sometimes you just have to. That's been the most challenging is that none of the providers that have treated her in the medical setting, hospital setting, sort of area, not more. The home therapists have, but like they have not really known much about pediatric feeding disorder or arfin and some of them had never even heard of that. And so when going through things, it's like trying to explain that to them and having to explain it to the receptionist that you know, you're talking to and then the triage person and then the nurses and it's. It's very frustrating, I think, and challenging to have to go through and like, nobody knows about it and so they don't understand the severity of, hey, she may have a stomach bug, but she's not going to take a popsicle to get her, you know, a little hydrated or we wouldn't be here. You know, the kind of things like that that's probably been my most challenging is explaining over and over and over to physicians that I would think would know or nurses that I would think and hope would know and be able.
[00:08:40] Speaker C: To kind of help you manage your care and support you manage care.
[00:08:44] Speaker B: Absolutely.
[00:08:44] Speaker C: Through all of that. Because I imagine you all are seeing a lot of different providers and physicians and nurses and other allied healthcare professionals.
[00:08:55] Speaker B: Yeah, we do.
[00:08:58] Speaker C: Yeah.
[00:08:59] Speaker D: Is there anything that stood out as being most helpful for you?
[00:09:09] Speaker B: Honestly, Yalls Feeding Matters website has been just a huge blessing to me because it's given answers where I had none and resources to where I could say, hey, you may not know about this, but here's this website that you can go to and it's going to give you some more information.
Family members who don't understand what we're going through, hey, here's Feeding Matters. Go look it up. They have some great resources on there. That has been really helpful to me to be able to have that and be able to point to that whenever people don't understand or wherever I feel frustrated and don't know how to explain it. Right. You know, that's fantastic.
[00:09:47] Speaker C: Yeah. I mean, that's amazing to hear, Heather, because that's the intent of it is we want to be your partner in this journey. We know this journey is really long and really isolating. And especially as you're talking about other family members or friends or even just general, like societal interaction is hard because people still don't know what PFD and ARFID are. And. And so I love using our resources to also help advocate in that way for what your family needs.
[00:10:18] Speaker B: It's such a huge help. Truly. I'm grateful for Yalls website. It's given. It's given so much to be able to point people there. So thank you for that.
[00:10:26] Speaker C: Yeah, of course. It's. We are here for all of all families, all the time.
Parents often do share that the advocacy side is really hard. And I think that's also where the website and some of our resources come in is we try to be that partner for you. In that way as well.
What advice do you maybe have for other parents who are trying to navigate this or maybe just at the beginning of their journey? What's something you want to share with them?
[00:10:54] Speaker B: A couple things, really.
The biggest thing, I think, is that the small wins are big. Like, first, I was really discouraged by the fact that she would tolerate the food being in front of her because it wasn't her eating it, and that was my thought process. Well, she needs to eat it for it to be success, and that's just not true. That's not how it works. And I'm just so grateful that she will tolerate some foods in front of her on her plate without freaking out and shutting down completely and ending mealtime.
So just have patience and advocate, even with family, when it's uncomfortable, that it is okay if they eat one bite. It is okay if you have to bring a separate, safe food for them. That it's okay. And it doesn't mean that they're doing something wrong, that you're doing something wrong. As a parent, I thought I had messed her up for so long. I was so discouraged because I thought, what did I do?
What did I do wrong? And it's not that, but it has become, what can I do better to help her? How can I better help her? How can I better help people understand? And that's kind of where my love for this consortium has come in, is the ability to say, like, I've walked, that I know what it feels like. I know the discouragement that comes with it. But if we can look at the little things and make them into big things and say that little win is huge, I think it just dramatically changes the way we see things. And the positive thinking will just get you through. It will get you through.
[00:12:28] Speaker C: Oh, I love that, Heather, you just left us speechless and smiling.
That sort of shift mentally is. Is so important. But I'm also so glad that you've. You're finding value in the consortium in that way, too, and kind of that link to passion and purpose and. And. And doing this for others that are kind of coming before you or alongside you or after you. Um, but that does take us to the consortium, so. Yeah. What kind of made you want to get involved with it or. Or tell us a little bit more about your thoughts on where we're at with the consortium right now.
[00:13:06] Speaker B: Yeah. So, funny story. Our feeding and speech therapist, like I said, she's been with us for years, and she. He came to me one day and she said, hey, I heard about this thing that Feeding Matters is doing. And obviously, like, I had been using Feeding Matters, so I knew who y'all were and what y'all did. And I was like, okay. And she said, so it's this really cool opportunity that you would get to be a part of this research consortium to kind of help drive resource or research. And I was like, I don't know that I'm smart enough for that.
But she had kind of heard me talk about my passion about, like, changing what it looks like to have pediatric feeding disorder and ARFIT and what it looks like in the medical community and being frustrated with care and saying, like, this is not okay and it needs to change and how do I. How do I help change it? And we're not in a rural area by any means, but we're not in a big hub either. So it's like, I didn't know how my voice could matter or how I could have any kind of say in anything to do with PFD and arfid. And so when she brought that to me, I was like, I don't know that I can do this, but I want to go to the interest or the meeting that y'all had. And when I went to that, I just knew, like, this is absolutely something I want to do. This is absolutely something I want to be a part of. I want to make sure that I am part of people who are like minded, people who have walked through this together and are ready to help other people understand and other people grow. And other people have that support that maybe they don't have right now, and maybe they're feeling like, where do I go next? I'm. I feel hopeless. And I don't want people to feel hopeless. I want people to know that they can get through this and that there is help. So that's kind of how that happened. And then I joined and we're like, we're in such good phases of research. Like, learning the research side of things has been fascinating to me. I'm loving that.
[00:14:58] Speaker C: Are you? So you like that?
[00:14:59] Speaker B: Did you.
[00:15:00] Speaker C: Did you think that you would like learning about that? Because I know that was a little bit intimidating.
[00:15:05] Speaker B: It is. I really didn't think I would. I'm in school right now anyway, so I was like, I just. That's a lot to add on. Yeah. Then I got into, like, I didn't realize how all of this goes in the back. Like, I love to see, like, oh, you. Because you can see, like, oh, well, they're putting out this new medicine or they're putting out this new treatment option, but you don't know what goes on behind the scenes. And so to see what goes in, I was blown away. I was like, so much goes into one little thing. That's incredible. And I was like, absolutely. I loved it. I'm all about it now.
[00:15:37] Speaker D: All the nuts and bolts of safety and the thoughts behind everything they're doing.
[00:15:41] Speaker B: Yes, yes. It's been so cool. So, yeah, I love the research part of it.
[00:15:46] Speaker C: That's amazing. And that's, I think, what's going to be so cool as we head into figuring out what the research agenda is and as we've even started some of that prioritization with where we're at now in IT and thinking about how we want to set the stage for where the field heads.
[00:16:02] Speaker B: Yeah.
[00:16:02] Speaker C: What have your been your thoughts recently on the consortium work, especially as we think about the research agenda?
[00:16:09] Speaker B: Yeah. So there are some things that have been brought to the table that honestly are huge needs that I never would have thought about because it's just not just readily, like, think about. Right. But there are some that I'm like, absolutely, let's. Yes, this is so important. This needs to be said.
And I mean, really, then it's like we look at those questions that were brought, right? And it's like looking at. There just isn't that support, right. There just isn't that, you know, like, program that could be like a bridge program from one thing to another. Like, what does it look like to have this? What does it look like to have this? So that was. That was really interesting and it was really cool to see everybody's experiences and everybody's struggles be brought to go help everybody else. Because at the end of the day, we've all gone through this, right. We've all walked through this and we're all here because of that. And so now it's like, let's go spread what we know. Let's go spread and help and how do we drive this forward and help other people?
Help other people. Not necessarily have to go through the struggles that we have, may maybe have faced. Right. Like, we've walked through those, but they don't have to.
So that's exciting to me that, like, I've walked through it. Okay. Somebody else has walked through it. Okay. It's awful. How do we. How do we go forward? But how do we look at the good in that? It's going to be a good thing and it's going to help somebody else.
[00:17:34] Speaker C: It will. It will really help someone else. And I think that's what's was so moving about our first prioritization conversation was, and just for everybody out there, it was a list of over a hundred different research questions of different areas of to be considered for what should be shared as a research agenda. And that was looking at it from a very person centered perspective, looking at it from a family, the entire family perspective, and looking at it from the, the team and what the system needs. And so it was really meaningful because, you know, with you all having that lived experience and bringing that perspective forward, every single question had a very personal meaning to it. And so. And we try to honor that experience and that's why narrowing down over a hundred research questions can be really challenging.
[00:18:28] Speaker D: But I think it spoke to the richness of the experiences represented in the consortium.
[00:18:35] Speaker C: That's such a perfect way to put that. I definitely agree.
[00:18:38] Speaker D: It was wonderful.
[00:18:40] Speaker C: Yeah.
So in looking ahead, what, what changes or improvements in the field or the system do you want to see for families? I know you talk a lot about how to make it better for those coming after you so that they don't have to go through some of the same things. What do you wish or hope to see in the future in that way?
[00:19:06] Speaker B: You know, the biggest thing I think there needs to be is a coming together of different providers and the family. What does it look like? You know, you hear about maybe in the medical field different, like say your kid goes to seven different doctors and those doctors getting together and looking at the information they have about that child and being able to say, okay, what do we see in common? What are we missing here? What could we put together?
I think the same needs to happen for caregivers and families. I think it's, you know, the caregivers are wonderful and what a huge blessing to have people who do know about feeding and who are able to come into the home and say, hey, this is what I know, let me help you. Hey, how can I support you today? But at the same time, the parents are the ones who are living through it. The children are the ones who are living through it. And so how can we, how can we make sure that maybe, and maybe this is something that doesn't even just stay in PFD and ARFIT at some point, right? That, that the parents and the caregivers and the children, they are what matters too. And they are living it. The patients are living it. The, you know, the parents are living, the grandparents, whoever's taking care of that child, foster parents, whatever that looks like, they're the ones who are in it day in and day out. And so how can we all partner together and it not be one's better than the other or one's. But we need to be a team. And I think that is such an important thing, is how we come together and work together to make things better.
[00:20:39] Speaker C: I love that, Heather. I think from what I've heard from families, and it's really different depending on, like, what access everybody has, but you're still slated with so much management of this person, talking to this person, and playing the game of telephone all over the place. So not only are you doing a lot of care and, and, and navigating the health system, but also being that communicator and that core communicator for that, for whatever you're facing PFD or ARFID or any other medical condition, too. And that. That. That's a really big, heavy burden.
[00:21:16] Speaker B: And I feel like, and this is no shame to anybody, but I feel like a lot of people don't even read charts anymore. So it's like you come in and you're like, they. They know nothing about backgrounds. And I'm like, well, this is what we're dealing with. Well, what does that even mean? Well, it means this, this and this. And then that doesn't get portrayed moving forward like that. That person doesn't go tell the main provider or that, you know, and then it's just like, like you said, like a game of telephone. Like I'm having to just throw everything out all over again. And that is. That is absolutely frustrating. And I feel like a lot of people get really frustrated being stuck in that place.
[00:21:53] Speaker C: Completely understandable. Frustration, for sure. Yeah. That's a hard place to be in.
[00:21:58] Speaker B: Yeah.
[00:22:00] Speaker C: Well, thank you so much for sharing just your story and everything. And the work of the consortium is something that we're incredibly, but also really increasingly proud of. I, you know, it's always really special talking to every member and yourself included. And then our meetings are just incredibly special. And I. And so meaningful for what we're going to be doing for the field.
But it takes people like you to be able to make that happen. And so I just really am appreciative of you taking your story and being a partner with us in this and even being a partner to share your story so that others know that they're not alone in this either. So thank you so much, Heather, for being here with us.
Really grateful to you. And we always end with one last question. It's kind of a big question, so maybe we'll break it down into a few parts, but especially as you're thinking about, like, the research and now knowing a little bit more about what goes all into that, and you know how that happens. What do you think are some of the biggest challenges that PFD and ARFID research have in making it more inclusive of family and patient perspectives?
[00:23:14] Speaker B: I think, honestly, that people, I think sometimes they forget, maybe the researchers, maybe the physicians, that we're all humans, we're not the condition.
I. That it's like remembering that we have to play a vital part in that as well.
And again, no shame. They're doing their job right. But I think we have to remember that it's not.
My daughter is not PFD and arfid. She is who she is, and that is something that she struggles with. So on the research side of things, I think it's looking at the big picture, right? Like, not only what she struggles with, maybe what comorbidities go with other things. Right? But, like, what it looks like in her area, what it looks like for genetics, what it looks like neurologically. There is just so many things, and if we're not all partnered together, it's going to be chaos. And research here and an article here and a thing here. And so pulling that all together is so important.
And remembering that we're all humans in this, too, and we're all doing the best we can to do the best we can in a really hard situation.
And so really, I think that's a. That's a big challenge because these researchers are so smart. Oh, my goodness, they're so smart. It amazes me sometimes, like, nurses, doctors, they're all just. It baffles me. I'm like, y'all are geniuses. I love it. But it's like remembering, like, there's a human side to things, too. There's a human side to things, too. And some people do really well with that and others don't. But it's. It's really cool to put it all together and make it all. Make it all come together as we're people. But we're not our conditions. We're not what we struggle with. We're just here to help everybody move forward and get the best care that they can, for sure.
[00:25:09] Speaker C: So true.
[00:25:09] Speaker D: The researchers are people, too.
[00:25:11] Speaker B: Absolutely.
Absolutely. They're all so smart. It. It's amazing to me, like, hearing some of the talk, I'm like, y'all are geniuses.
[00:25:21] Speaker C: Well, and that's. I mean, kind of circling back to how you're talking with everybody, like, it's just all being on the same page about it. And that's what I love about your answer of really trying to make sure we're all encompassing and seeing the human in one another.
[00:25:35] Speaker D: Yeah. My brother asked me one time, he's like, how did you, how did you, you know, get to do your PhD? And I'm like, you just don't quit.
You have something you, you like to do and that, you know, you want to study and accomplish and you just don't quit. Yeah, I don't know about the being really smart part. Just don't quit.
[00:25:55] Speaker B: That's a pretty smart move to not quit though. I'm just saying.
Especially like Master's PhD. I mean Bachelor's and associates as well. But like going that far is such dedication because not only is it I want to do this, but it's taking time away from, you know, other things that you could be doing. And so I'm, I'm really just. It baffles me to see people who go that far because they just work so hard and that's just such dedication and drive and I love that. I love seeing that. It's so cool.
[00:26:25] Speaker D: Thank you on behalf of all the people.
[00:26:29] Speaker C: I think that's what unites lived experience and the researchers and the, and the physicians and all valid healthcare professionals and medical professionals is it's that dedication and perseverance and so many of those other things. So that's a great question, Heather. And I think there's like some steps that we can make in, in finding those solutions. So. Yeah, thank you so much again for being here and it was just great to talk with you and those of you that are listening, we are so grateful to you for joining us in this journey and excited to share more as we continue. Thank you.
[00:27:06] Speaker D: 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 our 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 623-242-5234, extension 306, or
[email protected] you are not alone.
