When Your Babies Won't Eat with Shannon Goldwater of Feeding Matters

Katie Ferraro (1m 40s):

Hey there, I'm Katie Ferraro, registered dietician, college nutrition professor and mom of seven specializing in baby-led weaning here on the baby-led weaning Made Easy podcast. I help you strip out all of the noise and nonsense about feeding, leaving you with the confidence and knowledge you need to give your baby a safe start to solid foods using baby-led weaning. Picture this, you're pregnant with triplets. They're born four months prematurely and then they will not and can not eat. This was the reality for my guest, Shannon Goldwater, a new mom who with every effort to get her triplet babies to eat, they would end up gagging and choking and retching.

Katie Ferraro (2m 26s):

They were aspirating, vomiting, and eventually all three of her babies required feeding tubes for their nutrition. Shannon's journey to help get her children to eat, led her to five different inpatient feeding programs across the United States, at which point she became a very well aware of the incredibly disjointed way in which pediatric feeding challenges get treated, or in many cases mistreated in this country. So this is the first of a two-part interview with Shannon Goldwater who went on to found the organization known today as Feeding Matters. So Feeding Matters is the first organization in the world that unites families and healthcare providers to improve the system of caring for children with what is now known as pediatric feeding disorder.

Katie Ferraro (3m 10s):

And that term, she's gonna talk a little bit about it today because it only exists because of her organization and their work. So Feeding Matters was responsible for the universally recognized diagnosis that now is pediatric feeding disorder. And because of her work and advocacy, pediatric feeding struggles are now treated as a symptom to over 300 other conditions such as autism, cerebral palsy, and cystic fibrosis. So in this first part of the interview, Shannon shares her own personal story of struggling to figure out why her triplet babies would not and could not eat. And usually, you know, when you interview someone it's like five minutes of, gimme some of your backstory, tell us where you're coming from and then what's your thing. Like when we sat down for this interview and once Shannon got going and she starts sharing literally this heart-wrenching saga, like it would not end, it kept going.

Katie Ferraro (3m 55s):

It was like, oh my gosh, this poor mom, her feeding struggles, they're spanning like a decade At this point I was like, okay, hang on, we need to break this into two episodes. So the first episode here is about Shannon's personal story, which is so important for understanding the framework of what pediatric feeding challenges looked like before her organization Feeding Matters came onto the scene. And then what it looks like now that they've achieved it's universal diagnosis for pediatric feeding disorder. In the next episode we're gonna talk more about the formation of the organization Feeding Matters, a lot about their advocacy and the work that they've done and continue to do to get pediatric feeding challenges recognized by and funded by. And you know, we're talking a little about the money and where it comes from because the larger medical community is slowly starting to recognize, oh my gosh, this is a symptom for over 300 different conditions.

Katie Ferraro (4m 44s):

I mentioned autism, cerebral palsy, cystic fibrosis. So with no further ado, I want to introduce you to one of the most inspiring people in the entire world of infant feeding Shannon Goldwater, the founder of Feeding Matters.

Shannon Goldwater (4m 59s):

Thank you for having me.

Katie Ferraro (5m 1s):

Before we started recording, you were telling me a quick story. Can you tell our listeners about your horse ride today and who you met and how it went down?

Shannon Goldwater (5m 9s):

Yes, absolutely. So I was out on a trail ride today with some ladies and we were talking and one of the ladies was talking about her granddaughters twins who are 10 months old and she started telling the group about your organization and baby-led weaning and feeding and it was just, I said, are you kidding me? I said, I, I'm meeting with this organization today, meeting Katie. And she said, well my daughter just loves it and all of her friends watch. And at first I was a little apprehensive because it's so different from what I did with my twins, which is their mother now when they were young.

Shannon Goldwater (5m 50s):

But she said it's just amazing to see them thriving and and the variety of foods that they eat and how helpful your podcast and the information you share has been not only to her daughter but to her as a grandma.

Katie Ferraro (6m 3s):

Well, I think it's funny talking to Shannon Goldwater who founded one of the most amazing organizations Feeding Matters, that someone would refer to us as an organization. It's me, I have one other dietician and I have one gal that helps us and the three of us do all of this content. So like the fact that like the grandma on the horse trail, like it's trickling down and people are hearing about baby led weaning and learning about it. And I know we were kind of chatting about how sometimes like you know, like I said, how did grandma feel about it at first? And you're like, she was like kind of on the fence. But then when you see how many foods these babies can feed themselves, I love when we hear the grandparent like turn around success stories because it really makes their life easier too. Like my parents have 20 grandkids, half of whom did baby-led weaning and half of them who didn't.

Katie Ferraro (6m 45s):

And they're all a little bit older now too, but my mom always said it was so much easier to feed the baby-led weaning babies when they come over cuz I didn't have to make any special food for them.

Shannon Goldwater (6m 51s):

I was just gonna tell you that's what she said. She said, it's amazing they eat everything we eat. She said obviously in much smaller sizes and sometimes different textures, but it's just unbelievable to me.

Katie Ferraro (7m 4s):

Well, as you know, I,

Shannon Goldwater (7m 4s):

So what you're doing is working well

Katie Ferraro (7m 6s):

Thank

Shannon Goldwater (7m 6s):

You and helping people.

Katie Ferraro (7m 8s):

This podcast is turning in love fest, but like I am such a huge fan of the work that you and your team have done at Feeding Matters over the years. I'm so inspired by your story. Could you share with us how you came to be involved in the work that you do and pediatric feeding disorders?

Shannon Goldwater (7m 22s):

Yes, absolutely. So almost 21 years ago now, May 25th, it'll be 21 years. I had triplets that were born at 26 weeks by just four hours weighing one pound, four, five, and six ounces of birth. And to be honest, you know, we were really worried about them walking or talking and what their quality of life would be. You know, they had brain bleeds and sepsis and heart murmurs and just everything that goes along with being a micro preemie. And those first four months in the NICU were really terrifying, overwhelming. And when we went home, I really thought that we were now bringing home, while they were technically four months old developmentally, you know, it was like bringing home a newborn, you know, so they were around five pounds when they started coming home, but within just four weeks of them being home, feeding them just started to completely fall apart.

Shannon Goldwater (8m 17s):

And when I tell you fall apart, I mean constant vomiting, crying, screaming, arching. You would spend 30 minutes feeding them a two ounce little NICU bottle and they would open their mouth and just everything would just pour out of their mouth similar to a glass of milk, you know, being knocked over And it, you know, times three, it was very, very, very deflating and I was going to the pediatrician and they were growing, but I had a lot of support. You know, both my parents were here and live in Arizona. My husband's family is here and we're all native of Arizona. So I had a lot of support and I, we had had hired one of the nurses that we met in the NICU to help us.

Shannon Goldwater (8m 59s):

And as that help started to wean, so did my ability to feed them. And so then I really started to feel like a failure. Like, well the nurse can get them to eat, why can't I get them to eat? And it always seemed like they would only eat when they were sleeping and they weren't aware of what was going on. And it just was incredibly stressful. And so I was going to the pediatrician and you know, you don't know what you don't know as a first time mother. And so I am a person who wakes up at breakfast thinking about dinner. So to me my whole world revolves around food and I just, I quite frankly have an unhealthy relationship with food in that I live to eat instead of eating to live.

Shannon Goldwater (9m 39s):

Right? And so not being able to nurture my children and have it be a positive experience was just completely devastating. And I would go to the doctor and he'd say, well what you're doing is obviously working because they're growing and I think you're being overreactive reactive.

4 (9m 56s):

Oh, and use that word

Shannon Goldwater (9m 58s):

Overreactive. Oh like

Katie Ferraro (10m 0s):

Cringing right now and have goosebumps for you.

Shannon Goldwater (10m 3s):

So it came to a head where I finally said, well then I want you to feed them. And so you know, obviously they were unsuccessful at feeding them in the pediatric office. So they made a referral to a speech path. And the speech path who came to my house, bless her, was not a pediatric feeding specialist, did not have any training and she just started trying to feed my four month old's pureed food, which then started them gagging. And so I think she quickly realized that she was in over her head and referred me to a woman who was a wonderful pediatric feeding therapist. And she immediately reached out to my pediatrician and said, these kids I believe are all aspirating their lungs and this is a high risk and need to be immediately readmitted to the hospital.

Shannon Goldwater (10m 49s):

So that is when we found out that they were all aspirating their lungs, that none of them were safe to be eating, that eating was very painful. So they put in NG (nasogastric) tubes and that eventually led to G (Gastrostomy) tubes, which then led to fundoplications for two of my children because the vomiting, even with the tube, they could not stop vomiting. And then what I didn't know about a fundoplication at the time as well, it takes away the ability to vomit. It certainly doesn't take away the urge. And so I had these kids that just did not feel well. And so the journey began, I went to a total of five different feeding programs throughout the United States.

Shannon Goldwater (11m 32s):

And what I found very quickly was, wow, a program that works in in Baltimore works for one child does not work for the other. And then what's happening over in with K in Colorado is very different and worked for one child but didn't work for another. So you know, these were intensive inpatient programs for the most part where I would move my family across the United States and they would be inpatient and it was completely overwhelming, totally helpless feeling. And I think my biggest regret as a mother is believing that they needed to be fixed. That I really wanna see the narrative change when a child does need help with feeding that may be severe enough to require a feeding tube like my kids, that we use it the way that we use oxygen, that it becomes a means for having positive meal times that foster positive and meaningful relationships between parents and their children.

Shannon Goldwater (12m 29s):

Because what I had was just a complete nightmare. Not only did they dread eating, we all dread feeding them, they weren't not meeting developmental milestones. And why would they if every time they ate they were retching and gagging and choking violently from the tube feeding.

Katie Ferraro (12m 47s):

Hey, we're gonna take a quick break, but I'll be right back.

Katie Ferraro (13m 53s):

And that's three Outta three, like this wasn't like one child, you were experiencing this with all of the triplets consistently.

Shannon Goldwater (13m 60s):

Yes, absolutely. And it just, I again really felt like I must be doing something wrong, right? Because they're four months old, they came home on bottles. At no point had anyone mentioned to me that there could be such a thing as them having difficulty eating beyond the NICU. I knew in the NICU, you know, there's this feed and grow stage and that's what they would call it. And then you are discharged home. But by no means did I know that, that this condition even existed. And so when they were around three and a half, I was at a feeding program in Richmond, Virginia. And to be quite frank with you, I really thought I was gonna have a nervous breakdown. And at the time, this is a very personal story for me, but I'll share, I had a lap band to help me losing weight and I started getting very sick with this lap band at this inpatient program at Children's Hospital of Richmond, Virginia.

Shannon Goldwater (14m 53s):

And I remember the psychologist on the team and I were talking and I mean we started to think I was being psychologically affected by my kids because one day I could drink water and then the next day I couldn't and I would have a excessive saliva and I would be very nauseous just like my children. And morning was always the worst time. Same for me. So fast forward, they go through this program and unfortunately they were on some medication during the program and when they came off the medication they backslid 150%. And I had just spent four months of my life living in Richmond, Virginia, away from my husband. And it was just brought me to my knees to be quite frank.

Shannon Goldwater (15m 34s):

And so it was at that moment that she shed some light for me and said, a as difficult as this is, and I, I just thank her to this day. We know that when your children feel well because when they were in that on the medicine, it made them feel better and it couldn't be on the medicine long term. But we know that when they felt, well not only were they internally motivated to eat, but eating was much easier for them and that this led her to believe that by no means was this behavioral and that we needed to go home and continue searching for why, you know, they were in so much pain and discomfort. Well when I returned home, I also went to my own bariatric doctor and guess what?

Shannon Goldwater (16m 18s):

I'd lost about 35 pounds. I was so thin, so sick, it turns out my band had slipped and my body was protecting itself just the way that I believed today. My children were protecting themselves from the pain and discomfort that they were feeling when they were being pushed beyond their skill level, either due to texture or quantity because they had trouble breathing because it hurt when they swallowed, because it hurt going to the bathroom. I mean there was so many factors that I couldn't understand. And so like burning your hand on a stove, you know my body was telling me the same thing, right? Something's wrong, don't do that.

Shannon Goldwater (16m 59s):

Well I had this band removed and what happened? I immediately went back to feeling good again. I gained back the 30 pounds and then some and I went on with my life and at that moment I realized this is how my children feel. This is horrible and there's no way you could have forced me to eat during this time. In fact, if it did anything, it pushed me further away from enjoying eating, right? When people would say, you need to eat. And parents feel a lot of this pressure even with typically developing children, you know, how many foods are they eating? What texture are they eating? Are they gaining enough weight? Is their brain going to thrive? It's, it's very terrifying even when there isn't a disruption to feeding.

Shannon Goldwater (17m 42s):

So that's when I said I need to do something. And I changed my mission from trying to fix my children, if you will, to loving my children and trying to fix the system of care that was failing us. And I felt like I could do something good. I didn't know what that would be. But it's come to be this amazing organization which is today known as Beating Matters.

Katie Ferraro (18m 6s):

So when the triplets came home at four months, what, how many weeks were they born at, I guess is my first question?

Shannon Goldwater (18m 12s):

26 weeks by four hours.

Katie Ferraro (18m 14s):

These are 26 weekers, 21 years ago. Yes. That's a medical miracle in and of itself. So then they come home at like basically their birthday like and they're, when the first SLP who started force feeding solids on them when they were four months, is that four months adjusted age or was that their like chronological age? So they were literally like newborns almost.

Shannon Goldwater (18m 39s):

Correct. And I didn't know any better.

Katie Ferraro (18m 42s):

Of course not. You just do what your caregiver tells you to do.

Shannon Goldwater (18m 45s):

Well, and not only that, I have to tell you, I'll take it even a step further. When my pediatrician said, okay, I'm gonna refer you to speech pathologist, my first thought was, well wait, they're not supposed to be talking yet.

Katie Ferraro (18m 56s):

And a speech pathologist who doesn't specialize in infant feeding has no business feeding your babies,

Shannon Goldwater (19m 1s):

Right? But I didn't know that fact. I didn't even know that at that time that pathologists often leads in the care along with occupational therapists depending on where you live in the us. And that's another thing that I realized, right, is that everybody had the best of intentions. Even these programs that I look back and I feel quite frankly are inhumane and are impossible for me even to watch the videos what of what I was being taught and told to do.

Katie Ferraro (19m 26s):

I can't watch the videos,

Shannon Goldwater (19m 27s):

But it's, I'd be lying to you if I didn't tell you. I have some dear friends from those same programs. Now their children have different conditions, they went through the same program and that program helped them. And so I really started understanding what was happening here. And that is that we don't have best practices, we don't have enough research and understanding. And this condition, which was not a condition at the time other than failure to thrive, was being treated as a symptom of 400 other known conditions that a disruption to feeding is one of the symptoms.

Katie Ferraro (20m 4s):

What I noticed from this, when I hear you talking, you're talking about an SLP coming, which is great. So often we've talked about this with every other feeding expert here, and I know Marsha Dunn Klein introduced us, and this is something we go off on a tangent all the time, but just how siloed feeding care is, especially in this country. And nowhere did you mention a registered dietician who by the way should be part of the integrated feeding team. But when one of those people is in your house without the other people, there's no way she does not have this. It's not within her scope of practice to be talking to you about how many calories and how much protein your children need. And she wasn't trained in infant feeding, and I don't even know a polite

Shannon Goldwater (20m 38s):

Referred to Marsha Dunn Klein right here in my own state.

Katie Ferraro (20m 41s):

Isn't that crazy? You went all the way around why

Shannon Goldwater (20m 42s):

Did,

Katie Ferraro (20m 43s):

Came back to Arizona to find Marsha? And you make a good point that what works for one family doesn't work, work for other families. But like, do you think that that force feeding at their four month mark exacerbated these underlying conditions?

Shannon Goldwater (20m 55s):

No question about it. And so what happened is, for the next year and a half, well year actually, I was passed from therapist to therapist, provider to provider in silos, right? So no one's talking to anybody. So one person's saying this and one person's saying that. And I'll never forget when the GI doctor told me there were these things called feeding programs and they were inpatient. And at this point I said, oh my gosh, please, I need I, I am desperate. Like I will do anything. I need help. I need someone to help me. So I call the two programs and here's what you're told. And and granted this is 21 years ago, but if you come to program A, you're going to have a team of people that will include all the domains, right?

Shannon Goldwater (21m 39s):

Still in ability, the GI, the OT, speech, PT, the psychologist, and when your children leave, they will be eating and you'll be impatient. And then I call program B. And I'm told what I feel now is really the truth that feeding is more complicated than walking or talking. That you can't go to a program and take a process that takes two years, sometimes three, right, to go from breath to bottle to chewing and swallowing and independently eating foods on your own in two months or three months. And that they would work with me and we would go at the child's pace. Well I'm thinking, oh no, I can't do this anymore.

Shannon Goldwater (22m 21s):

I'm drowning. So I'm on the first plane to program B or a, excuse me, which was totally the wrong program for me because my children were in pain and they had no business eating. And so the months of forcing with the take a bite, good job taking your bite approach in a room of silence, not being able to wipe their nose. I mean it, it's, if you showed these videos to the general population, I have no doubt many would turn you in.

Katie Ferraro (22m 53s):

Shannon, I went down a deep rabbit hole yesterday getting ready for this interview and you're the only person in the world that can make me go to Facebook. And I watched a lot of videos of you from when they were little and like, first of all, how did you have video of them like back in the day? That's amazing. But I was like, if we posted videos like this today, we would get kicked off the internet. It was you were not abusing your childhood anyway. It was so painful to watch. And those children so clearly did not want to be eating. And I was like, I can't believe you even have video of it. They were in pain,

Shannon Goldwater (23m 22s):

They were absolutely in pain. And so those videos were, because I was trying to send videos to the different feeding programs who were guiding me once I came home. But when I ultimately, when I came back to Arizona, I didn't have the support that I needed of a team and you're back into a siloed approach. And as time would go on, what I realized is that I was almost brainwashed in my own mind into believing that it was behavioral because they made a lot of progress at program A. But all that progress fell apart when we got home because guess what? One had to be fed outside, one had to be fed in the bathroom and one had to be fed in the kitchen.

Shannon Goldwater (24m 2s):

That's six meals a day times three children, 18 meals a day of take a bike, good job taking your bike, good job swallowing. And they got 10 seconds of tv. I mean it's completely insane looking back. And so I've done actually a recording about where does common sense fall in all of this? And I think a lot of times it goes out the window. And so I started working with Marsha years later and Susan Evans Morris, who I'm sure you know, and I went to her program in the Blue Ridge Mountains and it was life changing for me. And she had us send in a video of us feeding our children before we came and I brought my occupational therapist with me and we spent five days there and afterward she gave us a letter and she said, I don't want you to open and read my thoughts until you've re-watched your video.

Shannon Goldwater (24m 54s):

Now that you've been at my program for five days. So incredibly eye-opening, my kids were giving me every cue in the world that this didn't feel good.

Katie Ferraro (25m 5s):

Hey, we're gonna take a quick break, but I'll be right back.

Katie Ferraro (26m 14s):

And you are just trying to keep them alive. Like I have quadruplets that could eat and I almost lost my, you know what? Every single day just doing three meals when you said 18 meals and the goodbye and the tv, like, I don't even know how you're here to talk about this today. Like, that is insane.

Shannon Goldwater (26m 31s):

So you watched that video when you're removed from it and you realize they're wincing in pain, every bi, every swallow, you can tell they're gagging, they're choking. If I, I had food poisoning, what on God's green Earth would make you think that making me eat would make my food poisoning better? I mean they're, they're communicating something to us that something is wrong. And I just knew initially that we needed to bring better service to Arizona in a better understanding. And that really was the start of a parent support group in my living room that over time has, you know, become this amazing organization that I'm so proud of that, to answer your question, that's actually really the catalyst for pediatric feeding disorder.

Shannon Goldwater (27m 21s):

And a lot of people don't understand this, but it was in, basically I just felt that a standalone diagnosis and the absence of a universally accepted term was the root cause of the system that was failing my children and so many more because we were always treating a symptom instead of a disorder. And there was no comprehensive system in place that included collaborative care and qualified providers and proper insurance coverage or an educational path to become a qualified feeding therapist. So I went to what was a medical professional counsel for Feeding Matters at the time that we gathered and said, what do you think of this?

Shannon Goldwater (28m 5s):

And they said, oh my goodness, you're right. Absolutely. And the easiest way to share with your audience what I'm talking about is that imagine that your child has a heart defect when they're born. And so they tell you it's not safe for them to eat and they're gonna have a surgery when they're one. And so they go on to a feeding tube and then they come around to the age of one and they have a very successful heart surgery and now it's safe to eat. And so they say, okay, well what about feeding? And the cardiologist says, I don't know anything about feeding. I'm a, I'm a cardiologist. So where is the team? Right? Where are the best practices and what could we have been doing along the way to foster a path to oral motor acceptance in other ways?

Shannon Goldwater (28m 53s):

Right? You understand this in, I guess my point being autism is another very good analogy of this. Autism used to be called schizophrenia and mothers were blamed and they, it was believed that they were cold to their children, refrigerator, mothers. And that is why they did not look people in the eyes because they had bad mothers. Now fast forward 40 years, obviously we know how incorrect that is. And I felt the same way about feeding. So it was these 17 medical professionals who served on our advisory team at the time who came together and approved the initiative to create a definition in an identity for what is today called pediatric feeding disorder.

Shannon Goldwater (29m 42s):

And it's very serendipitous. It took us five years to successfully be the catalyst to the publication of the standalone definition and diagnosis of PFD that before us was really being dismissed as a symptom of a different problem. And so it's become a launching pad now for all of the work. Not only that Feeding matters is doing, but what medical professionals and providers can do. They can do a better job because of this diagnosis code and it's written through the World Health Organization. So we service families and medical professionals all over the world helping educate about PD.

Katie Ferraro (30m 26s):

When you came back from Virginia in the inpatient program, were they three and a half years old? Yes. First of all, I don't say how do you have the means, but like you put your entire life on hold. I'm sure this is not what you had envisioned doing and motherhood changes us in different ways and you never know what God has in store for you and so on and so forth. But like this is three and a half years of dealing with this and I know that didn't end. Then you are traveling around the country, going to different inpatient feeding programs. Was the Virginia one the last one that you're like, that's it, I'm going home, I'm gonna feed these kids in a way that's comfortable for them. Like was that kind of a breaking point for

Shannon Goldwater (31m 1s):

You? Yes, absolutely. And that's when that therapist said, we need to work on, and by the way, that was a behavioral driven program, but with a different approach. Instead of psychologists doing it, actual OTs and speech paths were doing it and they were going very slowly and they were having children eat the right way and they were very supportive of what a parent's voice was and how a parent felt about what they were being asked to do. So Dr. Betsy Clauson was part of that program at the time, and she is the one who encouraged me to go home and love and enjoy my children and use the tube and work on rebuilding my relationship with them. And that's exactly what I did.

Shannon Goldwater (31m 41s):

And that's when I met Marsha Dunn Klein and Suzanne Evans Morris and so many more. And I spent the next five years focusing on my efforts on doing nothing more than rebuilding my relationship with my children so that they could come to the table without fear they would could sit in front of food without choking for eight years. I just cannot express to you for eight years there wasn't a single meal, a single day of our lives that one child wasn't choking, coughing, gagging, retching, screaming or crying. Okay? It was unimaginable.

Katie Ferraro (32m 19s):

You've been doing this for eight years now, Shannon, and I know I'm first of all so excited because your daughter goes to TCU and I'm a TCU graduate, like during college, they're eating real food. Am I assuming I, I don't know their life story and I don't know how much you're comfortable sharing now, but can you fast forward? Like how does it all end? Tell us.

Shannon Goldwater (32m 39s):

Yes. So I ended up going to Children's Hospital in Wisconsin when they were eight and a half, which I met through my work with Feeding Matters. And they worked with us for the next three years, well probably six years, but three for my daughter. And they were able to identify that she was using her tonsils to protect her airway and no amount of therapy was going to correct it. And so we removed her tonsils knowing that if she couldn't protect her airway, she'd still be on a tube and wouldn't you know it, she went from drinking 3oz a day with tears and forcing to in six months and was internally motivated to drink and had her feeding tube remove two weeks before her 10th birthday.

Shannon Goldwater (33m 26s):

And that's a whole another story, but you know that you can be beating your head against a wall, right? It's that definition of insanity that's if, if what you're doing isn't working, we need to reevaluate, right? Not that you have to climb mountains rapidly, but it needs to be a positive, you know, trajectory, right? So

Katie Ferraro (33m 48s):

She gets her feeding tube out at 10, what's happening to the other two at 10 years of

Shannon Goldwater (33m 52s):

Age? They're still retching terribly and really just we found out that also from Wisconsin and that one of my boys is a much better drinker than he is eater. So eating is from an oral motor standpoint is very exhausting for him. But he can drink like a camel and as he said it best at age 12 when he spoke at a Feeding Matters event, I think people waste a lot of time eating, but I can drink like a camel and he means it. So he's almost 21 and he is still on his tube, but only for one tube feeding a day. And I see no reason why he won't eventually get that out.

Shannon Goldwater (34m 32s):

But also he needs it for some medication and to stay hydrated. He doesn't quite drink enough water, but he's well on his way and if you met him and had dinner with him, you wouldn't know, right that all that he'd been through and or that he even had a tube today. But he does still have his tube and he does use it daily. And then my son will, his identical twin brother, he had his feeding tube removed just before his 16th birthday. But carbs don't make him feel well, Okay? No. And he, no, he probably knows his body best. What I was just gonna say is everything that you are teaching the world, that our bodies are sophisticated and what's happened in in cases like mine, and I realize they had severe feeding issues and I can't tell you that I think we would've avoided them all together, but do I believe wholeheartedly if we'd had the resources and knowledge that I have today that children should be leading the way that it should be a positive experience, I do not believe that their feeding issues would be as severe as they became and in that light will, right?

Shannon Goldwater (35m 46s):

So he knows immediately, but when something doesn't make him feel well within 30 minutes of eating it, even though every test may say you're not allergic to donuts, I'm telling you, when the kid eats a donut, he pays for it and he does not feel well. But for so many years their intuition was squashed out, right? It was what we wanted, what I wanted, how many calories, how many bites, how many ounces, how many hours on the tube when the tube would run you people don't eat that way.

Katie Ferraro (36m 21s):

Hey, we're gonna take a quick break, but I'll be right back.

Katie Ferraro (37m 25s):

And so I can tell Shannon that your life story has so informed your work with feeding matters, and that's what we're gonna tackle in the second part of this interview. Thank you so much for sharing your personal story. I'm inspired every time I hear it. I'm my jaw drops every time I hear it. You have dealt with so much. I can't believe you're still here today, but thank you for sharing your story with us.

Shannon Goldwater (37m 47s):

Oh, thank you for having me and giving me an opportunity to share and hopefully give people hope who may know someone or ever be dealing with this, that there is hope and there are resources like yours and beyond when there's difficulties.

Katie Ferraro (38m 2s):

I am certain that those of you listening are as awestruck by Shannon's story and her saga and her journey as I am. And in the next interview, which will be episode 326, that's the next interview episode, Shannon is gonna be taking us into the next chapter of her life where she starts to formalize her efforts to address pediatric feeding challenges through her work with the organization that eventually comes to be known as Feeding Matters. So I will link all of Shannon's Feeding Matters resources on the show notes page for this episode, which you can find at https://blwpodcast.com/324. I hope you'll join me in episode 326 for part two where Shannon's gonna be talking about pediatric feeding disorder and the role of feeding matters in bringing it to light.

Katie Ferraro (38m 44s):

A special thank you to our partners at AirWave Media. If you like podcasts that feature food and science and using your brain, AirWave Media has some great podcast opportunities for you. We are online at https://blwpodcast.com. Thank you so much for listening and I'll see you next time. Okay. You are a loyal listener, I can tell because you're still listening at the end of this episode here, or maybe you're just too far away from your phone to change it to the next episode, but I wanted to ask you for a real quick favor. So recently the baby-led weaning Made Easy podcast joined the AirWave Media Network who helps us with our podcast ads management, and every year AirWave conducts a listener survey to help gain more insight into who is listening to which show.

Katie Ferraro (39m 30s):

And I know you guys like things like real food and responsive feeding and respectful parenting, baby wearing, Montessori, some or none or all of those things. But AirWave wants to hear from you via this listener survey so that the ads that you hear on this show are of use and of interest to you. It only takes a few minutes to complete the listener survey, and you can be entered to win a $500 Amazon gift card at the end of the survey. As a thank you for participating. So to complete this survey, you have to go to this website, bit.ly/BWAirWave. Again, that's bit.ly/BWAirWave to complete the survey. And thanks so much for listening to the show.