"They Say 'Failure to Thrive' but Moms Hear 'Failure To Feed.'"

I remember the my daughter’s gastroenterologist saying, “Wow, you’ve really found a lot of great foods.” And, “We have so many patients who are less compliant than you.”

I said, “Well, you know, it was really hard. It was, at minimum, a halftime job. Do all of your patients, families have the time and energy for this?”

And he said, “Well probably not.”

Welcome to Burnt Toast! This is the podcast where we talk about diet culture, fatphobia, parenting, and health.

Today I’m chatting with Debi Lewis, author of the beautiful new memoir Kitchen Medicine: How I Fed My Daughter Out of Failure to Thrive. Debi has also written for the New York Times, Bon Appetit, Huffington Post, and many other outlets. She lives in the Chicago suburbs with her husband and teenage daughters.

This conversation is close to my heart. As most listeners know, my own daughter spent the first two years of her life dependent on a feeding tube. So reading Debi’s memoir hit home in all sorts of ways that we talk about, but I think this is a book that will resonate with so many of you. If you are a parent who has fed a kid—even if it went swimmingly, without medical complications—there is so much here that you will relate to about Debi’s journey, and the struggle to live up to external expectations about what feeding our kids looks like, and what it means for motherhood.

CW: We do discuss critically ill kids, medical trauma, and fatphobic comments that people (maddeningly) make in those situations. Take care of yourself.

PS. Friends! The Burnt Toast Giving Circle raised over $6,000 in less than a week! I am so insanely proud of us. And if you’ve been thinking about joining, we still need you! Here’s last week’s Burnt Toast ICYMI and the link to donate.

Episode 35 Transcript

Virginia

Hi Debi! Can you tell us a little bit about yourself, your family, and your work?

Debi

My name is Debi Lewis and I am the mom of two teenage girls, 19 and 16, and married to my husband and we live in the suburbs of Chicago. This is my first book that I’m very excited to share with all of your listeners. And in the rest of my day I make websites.

Virginia

We are here to talk about your new book Kitchen Medicine and when this episode airs, it will be your launch week. So folks, it’s in bookstores everywhere! It is just the most beautiful memoir of your experiences feeding your daughter, Sammi, who was diagnosed with failure to thrive at a really young age.

Let’s start by talking a little bit about that failure to thrive diagnosis. Tell us about your experience with it, because I think it is such a horrific term in a lot of ways. It’s both very common and deeply misunderstood.

Debi

I think there’s a lot of things wrong with the term. “Failure to thrive” is not a very specific diagnosis. It’s kind of a catchall and the real search is for why. Why would you diagnose a child with that? It’s not the end, it’s a symptom. And the other problem is that it’s a wildly inaccurate term. Because if you had met my daughter during most of the years in which she fell under that umbrella of “failure to thrive,” you would never look at her and think this child is not thriving. This was a pink cheeked, energetic, bubbly, cute little girl, meeting all her developmental milestones except for the ones that required her to be tall enough.

FTT was really diagnosing the fact that she wasn’t growing on the trajectory that doctors wanted. If you looked over many years, you could see that that growth trajectory was her own and steady and she didn’t drop very often and it was nothing that, in retrospect, I should have been worried about. But because she was tiny and because she wasn’t getting less tiny compared to her peers, we kept hearing that. And the way that diagnosis comes out is when a doctor or nurse points their finger at the parent and kind of wags it a little and says, "Whoops, Mom! She’s still failure to thrive! Got to get a few more calories in her," as though that isn’t the one thing you spend most of your life trying to do. As though I wasn’t chasing her around our house with a cup of Carnation Instant Breakfast already. So that’s the problem with that term. The diagnosis says “Failure To Thrive,” but what it sounds like, at least what it sounded like to me, is failure to feed.

Virginia

There’s so much inherent judgment and blame in that failure concept. The idea that we would be labeling a child’s body as a failure in some way is horrifying. And that we would be putting that on parents without giving the benefit of the doubt that, of course, this is a parent who loves their child and is trying so hard. It reminds me, too—on the flip side, obviously on Burnt Toast we talk a lot about kids in bigger bodies—and it’s so often the same thing. It’s the same judgment and the same assumption that somehow a parent needs to be informed of their child’s body, when you’re living in the world with this kid who’s not in the 50th percentile in whichever direction, so you’re getting the comments from strangers and family members and people all the time. People are watching your child eat or not eat. The idea of the medical establishment feeling like it’s their job to educate parents about this is something that I find problematic.

Debi

There are things that we miss when all we’re focusing on is the amount of food or the number of calories, either too many or too few. You miss the the the mechanisms behind whatever you want to call it instead of Failure To Thrive—not meeting standard growth trajectory or some other kind of more descriptive term. The question should always be, if this is a problem, why do you think it’s a problem? And why do you think it’s happening? That is really hard for a parent to dig into, when all they can hear is that they’re doing it wrong.

Virginia

It’s narrowing the conversation in this really unhelpful way. The why is the piece that the parent can’t solve without the help of the medical establishment most of the time. If there is an underlying medical condition, of course you need doctors to be doing their best work to help you figure that out and treat that. Instead, when you’re put into this confrontational, adversarial relationship with doctors, then there’s this lack of trust, and no good comes of that.

Debi

In both directions, right? We need to be able to find doctors that will work with us, but doctors also need to see us as parents as part of the team. If we’re shut down because we’re told we haven’t fed our kids enough Carnation Instant Breakfast that day, it’s hard to participate fully when you’re sort of drowning in shame. The erasure of self when you’re being called “mom” by someone who is not your child—it’s intense.

Virginia

Oh my gosh, I remember that from our years of hospital living with my older daughter. Yeah, just being “mom” and thinking, “I am Virginia. I’m a person beyond this.” And I get that doctors are busy and overworked—to be clear, Debi and I are also big fans of the doctors who have helped our kids. But taking that extra three seconds to learn someone’s name and look at them as a human is everything. 

Debi

Yeah, in a hospital setting I understand that every single person can’t learn my name, but a doctor who I’ve worked with, with my daughter, for three years should have written my name somewhere on the top of the chart.

Virginia

So, you and I both have this experience of the child who’s struggling to eat enough. And the medical system both blamed us and also did not have the answers. They’re saying “do Carnation Instant Breakfast,” as if that’s a newsflash. They don’t have any more revolutionary guidance for you. When did you realize that figuring out the food piece of this was falling completely on you? 

Debi

It happened several times that a medical professional would prescribe a specific diet to my daughter. She was on several restrictive diets over the years, trying to uncover what was going on. So they’d prescribe the diet and they’d hand me a packet of photocopied sheets with food information on them and then say, “Do you have any questions?” If I couldn’t think of something in the moment, reaching them later was really hard.

There were actually several moments—because we’re a family that is vegetarian, most of these doctors didn’t want us to add meat to our daughter’s diet and complicate the process since it never had been in there before. But so many of these diets had a lot of meat in them. And when I would ask, "What would you replace meat with, in our case?" There would sort of be a blank stare and the question of had we’d ever tried beans. As vegetarians, we’ve heard of beans. We’ve tried them a few thousand times.

So I think it was one day sitting on my kitchen floor with the photocopies and all my cookbooks, and realizing, there wasn’t another roadmap for me. Nobody was coming to rescue me. I was just going to have to figure this out. And partly, that’s why I wrote this book, because I think that’s a very common situation. If you enter any kind of online support group for any medical issue that has a diet associated with it, whether that’s families with children with type one diabetes or Celiac’s disease. It’s very peer supportive because there isn’t anything out there that we can find elsewhere.

Feeling that it was all on me was overwhelming but also it meant I didn’t have to consult with anybody. It was quite empowering. Once I had my groove going, knowing that I could do it myself and seeing it as a creative challenge was sometimes really satisfying. In the course of all of this, as hard as it was, learning to cook this way helped me fall in love with food in a way that I couldn’t before. I had to see it as important fuel, and also love and nurturing. Doing that for my daughter was a way of doing it for myself, too.

Virginia

There was a phase in our journey when Violet was still on her feeding tube and we were doing a blended diet for the feeding tube, which is not something I recommend everyone do. It’s incredibly labor intensive. But at the place I was then, with our relationship around food, it was also the first opportunity I had to feel like I was feeding my child directly. And this is not to formula-shame, because formula also saved her life. But I had spent the first year and a half just pumping formula into her feeding tube. So to be able to take a more active role in cooking for her, even though she couldn’t yet eat by mouth, was healing. Whether or not that was an important part of her recovery, it was an important part of my recovery. So if you’re a parent in this kind of situation, finding the ways to find your confidence with it and find some joy in it is everything.

Debi

Yeah, absolutely.

Virginia

I wanted to talk a little more about the experience of being on these medically supervised diets. You talk about a couple of different ones in the book. We also had to do fat-free for a while, and that is a brutal diet to do with a small child. When you’re on one of these weird diets, people say really idiotic things to you about how your kid is eating and their own food stuff comes up. So you did touch on this a few times in the book, but I’m just curious to hear a little more about how diet culture intersected with all of this for you.

Debi

It was bananas. I assumed that if an adult was on a diet like this, for medical reasons, that they would hear these kinds of things. I wouldn’t have been surprised. But I was horrified and shocked to hear people talking like this about my four-year-old to eight-year-old. There’s there’s one instance, I don’t talk about this in the book, but my daughter was on a six food elimination diet, which was no dairy, no soy, no eggs, no nuts, no wheat, and no fish—but we were already vegetarian. The results of that trial, of taking all of those things out, if it was successful, was that her esophagus would heal the damage it had sustained prior. And then we would be able to start adding things back in. But if she didn’t heal, then at the age of five, she would have been put on an elemental formula.

Anybody who’s fed their babies elemental formula will recall the smell of elemental formula. And babies don’t know any different, but four-year-olds and five-year-olds certainly do. So we had been warned that if she ended up on this formula, there was a chance she wouldn’t be able to bring herself to take it in and she’d need an NG-tube or a G-Tube. I was really afraid of that. I know I would have been grateful for it if it had kept her alive and healthy, but I really hoped it wouldn’t happen. And a friend of mine said, "Well, the upside of that, if she ends up living on that kind of food for the rest of her life, is that she’s never going to be fat. And she’s never going to have, you know, all these emotional issues around food. At least you could know that."

I remember where I was when she said it. I remember how it felt when she said it. My instinct was to kick her out of my house. I never wanted to talk to her again. I just couldn’t believe someone would say that there was an upside to never eating food again.

Virginia

I’m just taking a minute with that one. This idea that being fat is something to be so avoided, even if the cost is actually eating food. That’s so wrong and harmful.

Debi

It was awful. And I was angry, really angry in the moment, especially because I like food. I’m not afraid to say I think food is fantastic. I think it’s delicious. I think it’s adventure and joy, and love and community, and all of those things. I didn’t want my daughter to miss out on it. But when I really thought about it, I also felt really sad for my friend that her relationship with food was so fraught and so negative, that she could see the upside to never being able to eat again. I mean, it’s a sign of sickness to feel that way.

Virginia

It is a deep heartbreak to feel that alienated from food that the idea of injecting a formula into your stomach feels better, which is what life on a G-tube with elemental formula is. I also have so much gratitude for G-tubes and they are a valid way to feed somebody who needs to be fed that way. But you are missing out on a lot of life if that’s how you’re eating.

Debi

It’s not that I think there wouldn’t have been joy, community, family, and love in my daughter’s life without eating regular food. Of course, there would have been. But it was a big part of our lives, as it is a big part of most people’s lives. I was hoping that it wouldn’t be necessary.

There were other times that people said other crazy things to us about about her diets, including on that fat-free diet. Like when an administrator at her school crouched down and asked her how it was going. We both said it was awful and we only had three weeks left or whatever. And then this administrator asked my eight-year-old daughter to make a list of all of the foods she was eating so this person could then use that list to take off her holiday weight or whatever. I said “No!” loudly in that moment and pulled Sammi away from her. And I said, "This isn’t safe. Eating this way isn’t healthy for anybody. It’s only for right now because of the complications she has had in surgery, and it wouldn’t be good for you."

Her response was, "Oh, I don’t care. As long as it helps me lose this weight." And she wasn’t the only person who talked like that. Not everybody talked like that to Sammi, but many people talk like that to me about it.

Virginia

Yeah, we got a lot of those comments, too. I remember combing the grocery store aisles because the other thing about doing a fat-free diet when I did it about five years ago, is fat-free is really out of vogue with diet culture in general. So it’s hard to find fat-free foods now. I’m combing the aisles looking for the one dusty box of Snackwell’s. Because what cookie can I give a three year old who can’t eat fat? And people were still saying, “Oh, lucky kid,” or something. It’s enraging.

And, as you say, it’s also deeply depressing because it’s speaking to this larger dysfunction that we have normalized anti-fatness to the point that we will say these things to children. And, it’s minimizing their struggle. It’s minimizing their experience going through this really tough thing.

Debi

Sure, and also what other people think of as a fat-free diet from the 80’s or whatever was actually not really fat-free. Because a real fat-free diet that’s used for the treatment of, for example in Sammi’s case, chylothorax—where there was a break in one of her thoracic ducts—means that you need to limit yourself to under half a gram of fat per serving. An example of something that has more than that is air-popped popcorn. Chickpeas. Edamame. All these are foods that we think of as really healthy and we don’t think of them as fatty, but that’s too much fat. Can you imagine feeding a child on that little fat? I mean, it has huge effects on their mental health. It’s awful to watch.

Virginia

It was also chylothorax in our case. At the time Violet’s favorite food was guacamole. My best friend, Amy Palanjian who runs Yummy Toddler Food, worked so hard to figure out a fat-free guacamole. She came up with a recipe with I think we were trying to use peas in Greek yogurt, like fat-free Greek yogurt. And Amy, thank you again for going down that rabbit hole for me! But it tasted terrible. I could see the betrayal on my child’s face because I was like, “This is a guacamole you can eat!” and it tasted nothing like what she was hoping to have.

Debi

What fat does to food, from a culinary perspective, is all kinds of things you don’t think about. Even that spritz of olive oil on the bottom of your pan helps the spices stick to the food. It creates a mess when you take fat away. On top of it, that little dietary fat in anybody’s diet affects how your brain operates. It really made me understand the 80’s in a totally different way. All these angry women pushing their carts through the grocery store with their Snackwell’s. Like, of course they were cranky.

Virginia

I think the experience you and I both share is this understanding that these medical system failures are reinforcing this larger cultural failure, where we make feeding kids the main project and problem of mothers. In reading the book, I resonated with how much feeding Sammi became central to your identity during these years. It was something you were spending hours every week on and it really becomes your whole world. Yet it feels so unfair to reduce mothering just to food, just to the act of feeding kids.

I’m curious to hear how you have reckoned with that relationship between food and mothering? How do you see these things relating to each other now?

Debi

I became the default person at home for some of the same reasons that a lot of women end up the default person at home. When doctors told us that Sammi would end up in the hospital with every cold and she really couldn’t go to daycare, I looked at the cost of a nanny and what I was making, and it would have been like a treadmill for as long as we needed a nanny. We didn’t make as much money as we would have spent on one. And also she was was breastfeeding and I was the one with the breasts, so it just made sense for me to be the one that was home. Then whoever was home with her had to be the one who learned best how to feed her.

I will say also that my mother, who was the cook in our house when I was growing up, had said to me when I first quit my job and was worried that I was becoming boring and that all I was was a stay at home mom. It wasn’t enough for me in the moment. My mom said to just try to get into whatever it was I was doing at the time. So if that meant that was home and I just had to get into the mothering thing, I got into it. It was good advice for the moment for me. I really tried to get into it and find my little daily small wins in the kitchen. Sometimes that was a good strategy and sometimes it was not. But it did become my whole world for a long time.

I don’t think that’s so different from the ways in which other parents who are parenting medically complex children have their whole world become how to move their child who’s in a wheelchair from place to place and advocate for better services. Parents who are parenting kids with any kind of disability spend a lot of energy and effort on the things that will make their children’s lives better. Because we love our children, you know? We want to make everything as easy as we can. So in that way, it was not so different from other ways in which parents get really dug in on their thing.

Virginia

Because the world’s not built to get the wheelchair from point A to point B, because the world’s not built to help kids learn to eat when they’re struggling in this way. The culture is set up so that in general, with parenthood, to assume that there’s going to be this undue burden on the mother most of the time. Then certainly, when you add medical complexity to that, it just pushes so many of us into this box. This is not about not loving our kids, but some larger systems in our culture that were there for us would also be really useful.

We should also acknowledge, we both have a fair amount of privilege at play. And you in particular are, obviously, a very gifted chef, who is able to cook just from scratch to a degree that most people—myself included—cannot. Which is why things like formula are so important because not everyone can do the alternatives.

Debi

I would love to talk about that for a moment because the cost of feeding a child on one of these elimination diets is intense. It is wildly expensive. Our grocery bill at minimum doubled on that diet, on the six food elimination diet. I thought all the time about how could parents with less means ever do this successfully?

I remember my daughter’s gastroenterologist saying, “Wow, you’ve really found a lot of great foods. You’ve really figured this out. We have so many patients are less compliant than you.” And I said, “Well, you know, it was really hard. It was like, at minimum a halftime job. Do all of your patients’ families have the time and energy for this?” And he said, “Well, probably not. But they should just do the formula then if they’re not going to do what you did.”

That was horrifying to me. I couldn’t believe there wasn’t a consultant in that office who could, say, take a family to the grocery store and walk them through the brands of gluten-free noodles that work on this diet. Here is a coconut milk yogurt that you can usually get on sale.

Virginia

His use of the word “compliant” is so interesting there, because it shows how much more marginalized parents—whether we’re talking about parents of color, lower income parents, parents with their own disabilities, fat parents, etc—get dismissed by the medical system and judged.

And to bring it back to the whole “Failure To Thrive” concept, often that diagnosis is used as a justification for removing parental rights. For privileged white moms not so much. But if you’re a lower income mom of color, that’s gonna be a really terrifying diagnosis in a different way.

Debi

I remember, when my daughter was in the hospital for her final surgery, a friend of mine had his kid in the hospital getting treated for leukemia. He asked me how I had found the social work team, was I getting a lot of help. And I said, “What social work team?” And he said, “Oh, when we got the diagnosis, they were literally waiting outside the door.” You know, when you get a cancer diagnosis for your kid, there’s a trigger in the hospital system that just activates the Social Work team. And I thought, why are there not triggers like that for any diet that a doctor prescribes? Why is there not an immediate trigger for both nutrition and dietitian teams and a social worker?

Because changing your diet like this, it changes your whole life. And it’s emotional. Food is love and emotion and care. When there isn’t an immediate set of supports, other than someone handing you a sheet of paper with a list of foods on it, it’s a recipe for failure. No pun intended.

Virginia

Unfortunately, if there were those triggers, I would worry in our current system it would become a way to stigmatize parents struggling to follow the diet, right? Because maybe you’re going to bring in people who have these different biases that they haven’t reckoned with and are going to hold them against the parents. What you really want is a psychologist or social worker who’s trained in disordered eating and trauma-informed care. But that’s a whole level of support that I don’t think is even part of the puzzle, usually. So then that means the only people who can access it are people with other means.

For other parents, who are in this boat now, it might be really helpful to hear a bit about how you were able to hold on to your identity during that time —as Debi and not as the anonymous “Mom” the doctors talk through. Or. how have you worked to find your way back to that?

Debi

Yeah, I think probably during that time, not so much. I might have been indignant. I certainly was lonely, sometimes. But I had no time to be involved in the things that would have made me feel more like me. The exception would be that I did have a regular band that I played in. I’m an old-time Quebecois fiddler. I was lucky to get out and do that, usually once every week or two for an evening or an afternoon. That was great. It was actually great to be in that world where not everybody was even a parent. They didn’t really know or understand my kids or my situation. So it was a little bit of an escape.

But other than that, no. Feeding Sammi was the main job. I certainly worked and when I look back, I’m kind of amazed at the places and situations in which I worked. In hospital rooms, waiting outside surgeries, or in the midst of 500 other things. I would have a computer on the counter, finishing a website for a client while also soaking some weird starch in some weird liquid to try to form the ingredient for some weird thing I was trying to make that night. So you know, I fit it all in. But I was probably mostly running on an autopilot, as I think a lot of a lot of parents are.

I’m lucky, I’m so lucky, our family is so lucky that in the end, Sammi was curable. Sammi’s issue, it turned out, really had nothing to do with what she was eating at all. And so once we resolved the problem fully, I didn’t have to do this anymore. That took some getting used to: Trusting myself, trusting her, knowing that she would eat what she needed to eat and she was capable of it. And that I didn’t have to push. It took some time. I think writing this book was the thing that brought me back to myself, to appreciate all that we had achieved together, Sammi and I, and to appreciate all that I had survived. And to appreciate that, in the end, both of us are thriving.

Virginia

I look back on those years of my parenting and wonder how I was functioning as a person. I think that’s normal. I think it’s good to know that it won’t be that way forever. In my own family’s case, it’s not a curable condition. It’s something we continue to live with. But there have still been ways to find myself again.

We hear all the time, you have to take care of yourself to help everyone else and whatever. And it’s sort of a garbage message a lot of the time. But it is true that you cannot care for a kid in any circumstance, but especially not a complicated circumstance, if you aren’t holding on to one little piece of yourself. Even if it’s just and every two weeks band practice.

Butter For Your Burnt Toast

Debi

We are loving this season of Kids Baking Championship on the Food Network! This is one of our family favorites. It is a baking competition show, but all the contestants are kids. This season is the youngest group of bakers ever! There are some as young as eight or nine. They are making amazing baked goods that I could never achieve here in my 40’s. I absolutely love this show. I feel like sometimes these baking shows were what brought me back to the creative and joyful part of cooking. I learned to make layer cakes and eclairs and macarons and all kinds of other fancy things from watching these baking shows.

Virginia

I love that! I want to watch it with my eight-year-old because we’re at the stage where she’s still a cautious eater and when she knows how to make something herself it is hugely empowering. I think her seeing other kids baking and loving food would be good. I’m definitely gonna watch that. That’s a great recommendation. Thank you!

Debi

It’s very, very sweet. No pun intended there either.

Virginia

We love a good food pun here, obviously. My recommendation is for folks who are, like Debi and I, in northern climates. Probably the ice and snow is making you crazy, even though it’s March. If you have a garden or anywhere you can grow things, I recommend you get some poppy seeds. You just throw the poppy seeds out into your flower bed. You don’t have to dig holes. You don’t have to do anything fancy, you just literally scatter them around. Come July, you will thank me when you have spectacular poppies. I just sowed mine and I have a couple of raised beds. I just did the poppy seeds last weekend right on top of the snow and it’s just this little moment. I try to do it around this time every year when I’m giving up all hope that spring will return because it gives me that minute of like, okay, it’s coming back. Then I look at pictures of last year’s poppies and I feel really happy. So if you are a gardener or a garden-aspiring-person, poppy seeds is my recommendation.

Well, Debi, thank you so much for being here! I loved this conversation so much. Listeners, you need to get Kitchen Medicine right now! Debi, how can we follow your work?

Debi

You can follow me on on Twitter at @growthesunshine—my Sammi’s nickname is Sammi Sunshine—and also on Instagram @growthesunshine. If you have ordered the book, send me a message on Twitter or Instagram and let me know that you have. I will dedicate one of my quirky weird kitchen tools to you with a little story about it up on my Instagram account. 

Virginia

Those have been so fun to see. You have the most amazing collection of kitchen tools. Thank you for being here!

The Burnt Toast Podcast is produced and hosted by me, Virginia Sole-Smith. You can follow me on Instagram or Twitter.

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