Welcome to the Swall Your Pride podcast. I'm
your host, Theresa Richard. I'm a board certified
specialist in swallowing and swallowing disorders, a mobile
fees business owner, and founder of the MedSLP
Collective.
This podcast is all about delivering the latest
evidence based practice to medical SLPs everywhere.
Whether you're a new clinician seeking tangible tools
for treatment or a seasoned vet stuck in
a rut, my goal is to help ditch
the old school ways of the past that
no longer serve you or your patients, to
reinvigorate your passion for our field, to broaden
your knowledge about our scope of practice, and
to inspire you to practice at the top
of your license. So if you're listening, I
encourage you to swallow your pride, be open
and willing to learn because let's face it,
your patients deserve that kind of care. With
that, let's dive right in.
Just a quick disclaimer that all statements and
opinions expressed in this episode do not reflect
on the organizations associated with the speakers and
are their own opinions solely. Alright. Hello, Amy.
Thank you so much for joining me. Thank
you for having me. I'm a pleasure to
be here. Yeah. And welcome back, everyone, to
the Swallow Your Pride podcast.
Today's guest is doctor Amy Delaney. She's an
assistant professor in speech pathology and audiology at
Marquette University.
She's the director of the neurodevelopmental
feeding and swallowing lab focusing on the identification
of a norm reference for feeding development aligned
with the diagnostic criteria for pediatric feeding disorders
and development of assessment tools for the early
and accurate diagnosis.
Recent publications of her research highlight preliminary data
for feeding expectations in a development texture framework,
texture progression,
oral feeding skill assessment, and bite acceptance. She
recently was awarded an ASHA Foundation Research Grant
to support further standardization of feeding skill development.
Doctor. Delaney worked at Children's Hospital of Wisconsin
for twenty years in advanced diagnostics and intervention
of PFD
and pediatric dysphagia in medically complex children.
She is a founding medical professional council member
and outgoing educational pillar chair for feeding matters.
She coauthored the infant and child feeding questionnaire
and PFD consensus paper by Godet et al
in 2019.
Alright. So welcome to the show, Amy. So
let's let's start with the scoping review. So,
you know, share with us, if you can,
a little, you know, background. Where did this
come from come from? What were you hoping
to find? Yeah. Good question.
So,
you in
the midst of your dissertation can fully appreciate,
the scoping review from the perspective of I'm
actually redoing my dissertation that I finished in
2010.
So,
when I finished my,
PhD, I went back to the hospital full
time,
and just, you know, was having a hard
time balancing,
trying to publish plus patient care. And so
I never ended up publishing at that point
on my dissertation
and and that work. And
over the time, I wanted to
do so, but, you know, we needed to
update the literature review. And,
and then at that point, you know, long
ago,
scoping reviews weren't the standard in
in this kind of work. So we kinda
went back to start over,
which, you know, for anybody that's on a
dissertation, that's really
stressful
and,
frustrating. But in the end, it's it was
the right choice and,
really pleased with with the outcomes.
So,
we have a two part scoping review. There
are two standalone papers,
that have come out of,
this work in,
AJSLP.
And, ultimately,
what we were interested in is kind of
the state of the state of
clinically observable
oral feeding skills and the norms around that.
So what are we basing our clinical observations
on at this point?
There's been plenty of,
work and literature out there stating that we
just don't have a standard
clinical tool that we can use,
for pediatrics.
We have checklists. We have some, you know,
PROMS,
measures that,
are wonderful.
But, you know, where where did the data
where have they come from? Where are the
gaps? Where do we need to go from
here?
The result of my,
dissertation
was actually developing an observational feeding scale on
the oral movements
that we observe during a feeding. So I
was very much interested in updating that,
through this more rigorous process,
or formal standard process.
And then,
you know, this is where it ages to
me and my time,
where now technology is a benefit to us
where we can do
consensus ratings, you know,
digitally and more easily than,
what we could have in the past to,
further validate the scale that we had originally
developed. So I have a bunch of data
that we've used,
for the scale, but I haven't wanted to
publish it because I knew I needed to
update it. So here we are in 2025.
So,
the scoping review,
the interest of that was,
infants that have moved beyond
liquid only diet. So, you know, kind of
four to six months,
through early childhood.
And any
literature that was out there on,
the methodology,
the population studied,
that have worked to establish some of our
foundation,
norms that we use as clinicians
ultimately.
So,
you know, our criteria
were,
that the participants had to be observed.
They could be video recorded, but ultimately, the
observations and the,
measures that we were taking were primarily with
our eyes, which is our primary clinical,
particularly in pediatrics,
not instrumental,
but that they needed to be also doing
some,
observations of something other than liquids.
And in the general category, we're gonna say
solids,
and,
that they needed to provide the, you know,
the specific skills that they were measuring.
And,
yeah. So we, you know, we did that
that lit search. We worked with one of
our librarians at the university.
And, of course, with all of
the vetting that you do of keywords and
the process in your searches, you still end
up with, you know, 20 some thousand articles
that you have to go and lead through,
to get down to, you know, a core
set of
of articles that we actually were going to
use to analyze. So,
ultimately, we,
ended up with a core set of,
articles
that,
four 14 of them out of a whole
bed,
that really met our criteria. So, you know,
we know that we don't have a lot
of norms
for developmental,
you know, feeding skill progression.
We know that there's gaps,
but we haven't
really dove we had no. Nobody's really, dove
into exactly what are those gaps and and
what what do we know. So that was
the goal of the part one
paper. So,
we were able to look at, you know,
how are how are participants being participants being
fed? What are the settings that they're in
for this work?
What textures are they reported to be observing?
And utensils,
what specific areas of oral feeding skills are
they really looking at?
How are they quantifying this? So,
so we went back through that whole process,
to and following, you know, the,
the PRISMA,
guidelines for scoping review.
So that's a very structured
process,
that you can follow. So,
you know, it was just really interesting to
see,
you know, the breadth of what's out there,
you know, how much, you know, gap there
really is. So where,
there's a lot of work in slightly older
kids and less work in that four to
six months to 24,
which is when all of that development is
really being established.
It's really critical times where we wanna be
able to catch kids early, or
there's gaps in, you know, individuals studying one
aspect of the feeding process. So it might
just be chewing. It might just be acceptance
of the bite.
It might be just concerns.
So,
there are, you know, again, a lot of
gaps in, looking at the entire process. So,
you know, I think of feeding across the
phases of swallowing. We need to be accounting
for all of those observations,
when we're watching a child eat. And,
so
yeah. So that scoping part one is really
about those methodologies,
you know, who we are,
studying,
and in general, what some of the the
data are that that have come out of
that thus far. So where so so share
with me, you know, where where where did
this this lead you? I I feel like
a lot of times this leads to more
Yeah. Than answers. Yeah. Yeah. So the part
one was really about
what's the work that's come right before us.
And part of that process then was to
pull out all of these specific observations that
have been made. The part two of the
scoping review was then to take those 107
different observations
that,
have been in the literature
and then analyze those. So my hypothesis has
always been, we don't have a 107
oral movements that we're observing.
You know, people
report on similar observations that have it worded
slightly differently or maybe have a slightly different
operational definition,
or the way that they're measuring it might
be a little different.
They might have skills that are specific to
different textures. So it might be the same
skill, but they're reporting it for puree versus
a solid.
So we have this kind of inflation
of observations, which makes it very hard clinically
to know what to exactly observe, what's important
to observe,
what will help us define age appropriate feeding
so that we can
use that, you know, benchmark to identify when
kids are faltering so we can address that
sooner.
So, so we took the 107
skills, and then we analyzed them. So
we sorted all of these skills based on
the texture that the,
study had looked at. We
coded each of the textures by which phase
of swallowing is this really attached to. And
then,
you know, what structures are we really observing?
Because we know we need to be accounting
for all of those features.
So
we coded all of these skills in all
of these different ways and then sorted and
analyzed and looked at them,
in a variety of different ways. And and
essentially are are proposing that,
any feeding skill measure needs to account for
multiple textures, certainly.
We need to account for,
physiologic
timing, so cross spaces of swallow in our
observations,
to be comprehensive.
And then a lot of the skills that
are out there are really subjective. So,
you know, what is my definition of smooth
movement or,
strong
closure? You know? So there's things that without
instrumentation,
we can't, you know, truly measure. So,
to what extent do skills meet some sort
of objective criteria that we could truly see
and be reliable on versus
maybe they need to be reworded slightly differently.
And, and, ultimately, when we started looking at
all the skills across the textures, we we
could identify core skills that really applied regardless
of the texture. So we don't need all
of these texture specific lists of skills, you
know, outside of maybe sucking
or, you know, biting and, you know, those
specific chewing motions, but a lot of those
motions we still see, you know, with other
textures. So,
so we really propose that, you know, future
work needs to consider these features when we're
developing
a measure, ultimately. Alright. Awesome.
Let let's so let's talk a little bit
about the other study that you guys just
published in the other measure.
Also the developmental texture framework? Yes. Is that
yes. Yes. So,
we had a paper,
published a couple months ago in the journal
of texture studies,
and it is a
developmental texture framework,
that
is,
based in food science. We had a food
scientist,
on the paper,
as well as a dietitian,
myself
and Suzanne Evans Morris. Who had some very
foundational work in,
eating skill development, and then doctor Gaudet,
who was our primary author on the consensus
as well and a previous colleague of mine
at children's.
And so
what we had intended to do was we
had,
reached out to Nestle Research, and they do
a fit study every eight years. So every
eight years, they do a national survey
on collecting twenty four hour diet recalls
on,
healthy kids from birth to 48 of age,
and they do all kinds of nutritional analysis
on these diet recalls.
And
so from our paper that we published in
'21
where we present,
this concept of a texture analysis,
we wanted to get access to code those
data. We were given,
access to the datasets,
which is about 2,700
kids,
and
code
the diet records for texture and then redo
the analysis. So we can see what textures
are present in the diet at different ages,
how often are kids
consuming foods by these textures, and then how
much of their nutrition is finds some different
textures. Because that's really
in the general
population. That is probably the most obvious visible
marker of feeding development as my trial developed
from,
you know, nipple feeding
to solids, which is really the kind of
hallmark is if somebody's like, oh, yes. They've
started solids, but we all know that solids
are very different.
And, you know, at what point do they
go from
practicing with their first solids to eating like
the family? And we know those transitions occur
really within just those first couple years of
life and very, very rapidly.
So there's a lot of moving pieces there.
And,
so
the the kind of texture consumption
analysis that we do is looking at those
kind of in this three pronged way.
You can have a texture in your diet,
but that doesn't mean you have good skills
for it or that you can consume your
nutrition by it. So presence is important, but
it's not the full story.
You can be offered
a lot of different types of textures and
foods frequently throughout the day, and that's great
if your family feels like that's appropriate. But
that doesn't mean you're consuming a lot of
your nutrition by those textures. So, you know,
if I have a two year old
that has, you know, all a variety of
textures in their diet, they're offered it every
day at multiple meals, but they take one
bite of each of those, and the most
of their nutrition is by liquids, that's a
very different
profile
than
a child that is consuming the majority of
their nutrition by, you know, like a a
nonformula
liquid beverage and the majority of their calories
from chewable solids in the family
foods
during the day and their three meals and
two to three snacks. Right? So,
so what we are doing is now analyzing
beans' diet records from a national sample in
this way so that we can, as
clinicians,
understand
when does it seem feasible to have textures
in your diet and offer them often and
then ultimately
consume your nutrition by them. And I envision
this to look like a growth curve ultimately
so we could
ultimately kind of plot our kids and have
something measurable to do when we're assessing
our kids and really identify
when they might just be not progressing in
the same way. So, you know, we say
we wanna advance diet. We have a child
that has delayed advance of diet, which is
kind of like classic hallmark of identification,
that we could actually put some quantification
to that. That's that's amazing that you were
able to get your hands on that large
dataset.
Yeah. Yeah. It's it's an honor to be
able to to have that. I think it
can be some really powerful data.
Certainly, you know, we we need to vet
all of that then with feeding skill observation.
What are the skills then that
Yep. We are required to support that? So
we have these kind of two arms of
the research program that are right now working
in parallel, which, you know, with our current
data collection, we're we're bringing together. So we
gather the same data
and observations
with the standard textures, in our current data
collection. So then now we can say,
yes. We have this texture consumption profile, and
here are their oral feeding skills that they
are using
so we can start to to match that,
for,
some benchmarks for Estesan. Awesome. Awesome. So where
are you now, Amy? Where where
Yeah. Yeah.
So we're actually in the process of the
analysis
of that large dataset,
which you can imagine is super huge. Yeah.
And but it's that's really exciting.
And preliminary data have come out of that
is just really
cool to
see, different developmental trends,
in presence and frequency for sure where we
where we're really starting to see different feeding
stages
that,
are different than our well child visit schedule.
So that it's not start solid at six
months, and by 12, you should be on,
like, family food. But what does that really
mean? And right. That's a big window.
So
I'm hoping to,
establish different feeding stages and milestones,
and then be able to have primary care
providers and caregivers really assess that from home.
This is kind of a home friendly,
way to think about it. So, hopefully, we
can really prevent some of TF data from
happening because we're catching it so much earlier
and it just differences.
Yeah.
And then if not, we are able to
then measure changes
in therapy
because we can redo that analysis at any
time,
and look for measurable changes, you know, across
time. So, you know, that'll be the work
in the background. So it's it's always twofold.
It's, you know, selfishly as a clinician, what
can I get so that I can do
my job better? Yeah. But
what kind of information can I put in
the hands of caregivers
and frontline providers
Yep? Before they ever see us? Right? To
have seen to get to see us, there's
gotta be something pretty much going on. So
could we, you know, address that earlier and
maybe somebody else could address it before they
actually need to see us? Yeah.
Yeah. So that's kind of that goal.
So that'll be, you know, in the process,
during the analysis as well.
And then for the other arm with the
feeding scale, we're actually just getting ready to,
invite
some
people, to Adelphi consensus rating study. So,
we're taking those 107
feeding skills that we identified, and we're gonna
have raters
rate,
the importance of these skills. Do you feel
like these skills are important and to what
extent,
for feeding assessments and establishing
benchmarks,
for development? And then
those skills that
meet consensus, we'll do another round of surveys
of now what do we actually think we
could observe reliably.
And that's essentially how we had done the,
setup for my dissertation.
So we're repeating that, but at a larger
scale.
And this time, instead of just having speech
pathology, we're also doing OT and psych,
part of that process. So anybody that really
observes and assesses
children,
while they're eating clinically. So,
and then we'll do some focus groups after
that and essentially try to reestablish
the scale that we had with whatever now
new vetted skills and movements,
that make it through that process. So,
that's kind of that
next stage now. Some of the scoping review
is to do that. And then once we
establish the scale, then we can start putting
out the data on the actual,
skills that we're observing in in typical kids.
That's awesome. This this is really commendable, Amy.
I I mean, this is Thank you.
I commend you for having such a big
vision to tackle such a big but important
thing.
Yeah. Thank you. A lot of time. Yeah.
I I mean, it's so it's so needed
in in our field. It's so needed for
moms, for parents, for kids, for pediatricians.
But let let me do I'd love to
ask you just, like, a personal question. Is
this you you worked clinically for forever until
you got into this work. Had this had
this always been sort of a thing in
the back of your mind, like, I really
wanna get to the bottom of this, or
I really wanna study this more. How how
did this all come? Yeah.
Yeah. Getting my PhD and doing research was
never on my radar. I avoided that at
all cost.
And,
you know, I really landed my dream job
right out of grad school.
I started as a CF at Children's.
So I was, you know, exposed to just
a wide range of of children and ages
and and diagnoses and disorders. And,
so I I ventured first into
motor speech. So I worked with Ray Kent
initially on my dissertation,
who is, you know, icon in motors it's
motor speech world, and then
transitioned to,
Katie Houston, who was doing a lot of
work,
in speech
intelligibility
norms
and,
and developing some of those benchmarks. So, you
know, so that was always the motor aspect.
The movement physiology aspect has always been of
interest to me. How does the body work?
How does it work to produce speech sounds?
How does it work to chew and to
swallow? And when I went to the hospital,
I was, you know, immediately exposed to,
training on swallow studies and fees and
clinical assessment,
had the opportunity to join the interdisciplinary feeding
team. So I was exposed to
GI and nutrition and psychology and nursing and
all of those right off the bat,
where you're working. And it's children's in in
Milwaukee is truly an interdisciplinary.
So you work side by side evaluating and
assessing and asking questions. So you learn just
a ton. And that's where the whole texture
analysis came from, was sitting next to the
dietitian who's taking the twenty four hour and
crunching their nutrition numbers and just being super
jealous that they had ways to do that.
Yeah. Yeah. And I'm like, oh, I could
do something similar to that, and that just
kind of evolved over time. Yeah. Yeah. And
now I've entered it into something more formal.
But,
so, yeah, I started venturing into feeding, swallowing.
And,
you know, as I started saying, okay. I
need to assess these kids and identify if
they need therapy.
What do we have out there to help
me
with that?
And really at that time, because this was
really taking us back,
because I started my PhD in 02/2002,
the pre feeding skills checklist was, you know,
still pretty much what people use. And even
still today, a lot of people still use
that by Suzanne and Morris, and she published
that in the pre feeding skills book,
with Marsha Duncline.
And when you dive into that, and Suzanne
and I talked about this on multiple occasions,
you know, she based it on six kids,
and she had, you know, really in-depth observations
and video analysis,
and looked at when skills kind of emerge
and seem to be mastered.
But, you know, I always knew that, clearly,
we needed many more kits to be able
to establish this as normative benchmarks.
But it's really it's it's complicated and time
consuming,
you know, to
to do the video analysis and establish those
things. And so at that point, I was
encouraged
to, well, maybe go back for your PhD.
You got these questions,
you know. Why don't you do that? I'm
like, oh, okay.
Yeah. So, but yeah. So just out of
those clinical questions, you know, developed this kind
of desire to answer them. Yep. And I
just, you know, I had opportunities
that I took and I I worked really
hard at to to make those things happen.
And,
you know, I worked at the hospital throughout
my entire PhD program.
You know, so you're constantly double dipping, and
it's you know, it takes it took me
longer.
And then I chose to do
a project that was my own, ultimately, that
I could continue. So that was a bigger
project than probably necessary, so that took longer
too. And you know? But it's established my
research program. So it was you know, the
time was worth it, and it was more
meaning it was meaningful to me. That's what
I needed,
in that moment to kinda push forward and
persevere,
you know, through the program and, you know,
come out on the other side. Yeah. Yeah.
No. I I I love that just as
a clinician, but also as a someone that's
in the throes of dissertation work right now.
It's it's
you know, I think sometimes when we're working
clinically,
we just have all these questions, and it's
like, am I just not a good clinician
because I don't know these answers, or do
they just not accept? You know, I think
we Yeah. Throw ourselves to the wolves and
Absolutely.
Yeah. And, you know, I know a lot
of times I'm like, am I just not
smart enough? Did I just learn this? Like,
where is this information?
And the reality is is that a lot
of times it just doesn't exist and nobody's
uncovered yet. And Yeah. Absolutely. And yeah. As,
you know, as clinicians particularly in this area,
we're really in our infancy still in the
literature and
in in this work.
And there's a lot of great work out
there, and it's pieces
of the puzzle. Mhmm.
And that's where kind of the scoping reviews
look at. Yeah. Oh, they're looking at that,
and they're looking at that, and that's great.
And they're looking at that, or they're looking
at this age, but we need to we
need to fill in those gaps. We need
to look at, you know, each of these
kids as a as a whole because what
else is influencing
those individual things that we're looking at.
That certainly makes projects more complicated
and, you know, a little bit harder to
manage.
So,
but, you know, that's just my direction,
is to look at them all of those
pieces. Yep. Yeah. And I think as a
clinician too, it's so helpful because,
like I mentioned, I was part of a
scoping review, gosh, maybe three, four years ago.
I can't even remember how long ago it
was now. But it was so interesting to
to realize that so much literature had been
so much research had been done in certain
areas, and and so little had been done
in other areas. And it's an addition that
takes the pressure off of us to say,
okay. I'm not crazy. I didn't just not
learn this stuff. Like, there just really isn't
a lot to know or, you know, there
isn't a lot that we know yet
in specific areas. And I just think that's
very encouraging for, you know, clinicians that do
wanna go back and get their PhD maybe
later in their career. And I was I
was kinda the opposite of you. I was
someone that I wanted to get my PhD
right out of grad school. And I had
a I did a a master's thesis, and
I had the most amazing,
master's mentor,
thesis mentor, and she just said, no, Teresa.
I really encourage you to go work for
a while before you get your PhD, before
you start your PhD, because it'll just give
you you'll know what you wanna study at
that point. Sure. Yep. And, you know, naive
little grad school, Teresa, was like, no. I
want I know what I want to study
yet. And, you know, fortunately, life took me
in other directions, and I you know, it
was fifteen years before I went back. But
now Yeah. I'm like, gosh. I'm so passionate
about what I wanna study, and I know
exactly,
you know,
where the gaps are and what we need
to to look for and find. And and
so she was 100%
right, and I will know. Yeah.
Yeah. Exactly.
Yeah. Yeah. But I think there's just so
much you learn clinically about what what we
don't know, and it's it's not a personal
attack. It's a crud. We just need to
know more of that.
Yeah. And I yeah. And I think,
you know, from a clinician
perspective, you see, like, oh, I'm not doing
research. I don't know anything, which is baloney
because
as a clinician,
we know what's out there. We just don't
have the capacity in that current role to
generally answer some of those questions, definitely some
questions,
and to participate. But,
no. We do the best that we can
as clinicians. We have to see our patients.
We can't say, well, I don't have a
norm on that, so I'm just gonna, you
know, see you.
You know, we have norms. They're just maybe
big age ranges. So,
they're just not sensitive enough to identify kids
earlier,
and that's and that's really a focus. So,
you know, we do go and and present
and, like, well, how do you know this
kid's typical if there's no norms? Like, I
get that question all the time. Well, yeah,
we have to vet it against their medical
status and, you know,
their general development
and, you know, etcetera, and the norms that
we do have so,
so that we can continue to refine that,
you know, over time. Yeah. That's that's a
tough thing that we always experience with my
son too was that there's so many scales
and measures and things that he is not
even on. You know? He's not even on
the normal developmental growth chart. But then you
look at other medical conditions, and he doesn't
have any. You know? So it's it it
seems like to be a disconnect because according
to some scales Yeah. He's way off them,
and then according to some, he is he's
right on. So it's it's really tricky for
some of these kids that have multiple complexities,
and and it's it's hard to piece them
out. You know? That's why it's just so
important to look at the whole big picture
and, you know, okay. How is this kid
doing as a whole? What are all these
other classes that fit into the puzzle? And,
you know, I think we're getting to this
point in speech pathology that we're appreciating that
a lot. We're appreciating the big picture. As
you mentioned, you had, you know, dietitian and
and other colleagues other interdisciplinary
colleagues on your papers too, and I'm I'm
loving seeing that more now because it just
just gives us a much more bigger picture
of the kid.
It sure does. And, you know, and based
on your experience too, I mean, it really
shows that there's just not one thing that
we can use Yep. To identify kids. It
it's going to be multiple
pronged
in the approach
to and not just, you know, a nutrition
having to have other disciplines, but even within
our scope that it's just not one measure
that's gonna answer all those questions. Yep.
So we do have to have, you know,
multiple
multiple measures in our arsenal that we are
using, and we use that to the best
of the current state of knowledge. And we
refine that as we go. So in our
clinical practice and our standards, we just need
to be fluid and open to
those changes, which sometimes can be hard. You
know? We got our rhythm, and we know
what we're doing. And now
introducing something new can, you know, make things
a little bit more complicated.
And,
you know, but in everything, we just have
to be open to that new data that's
coming out with your new process and, you
know, it's to help the kids. Yeah. Yeah.
Yeah. And and I really appreciate what you're
doing with your work too because I think
it'll help so many, you know, pediatricians
too. It's you know, I I know for
my son, we go we have about three
different pediatricians for just different things that we
go to, you know, but it's interesting. I
I love and appreciate all of them for
their different expertise,
but what's interesting is, you know, one will
say, oh, you know, no. They're right on
track. Or one will say, no. This is
really delayed. We need to get some help.
And Right. And and it's tough. You don't
wanna undermine any of their expertise, but they're
all going based on different things. So,
hopefully, your, you know, your your feeding scales
and and frameworks will help to
sort of get everyone on on the same
page a little bit more. Yeah. I I
hope so. And and, yeah, you know, everybody
has a different perspective based on their discipline,
where they've trained the exposure to different populations
of kids and disorders that they've worked with.
You know, what's one perspective of maybe not
growing so well versus another? You know, some
are gonna be super sensitive to changes in
growth or,
differences in, you know, what they're seeing based
on who they've treated in the past.
So I think it's really important for not
only for other providers when you're working together
on a patient, but for caregivers to know
that different providers with different backgrounds are gonna
look at it differently.
It doesn't mean one's right or wrong. It's
just a different perspective, and you have to
pull those pieces together Yeah. For your child.
And that's it's hard. Right? That's hard. Yep.
Yep. Yeah. Awesome. Well, thank you so much.
I mean, this has been just a awesome
conversation. Is there any anything else that you
like to share, or did we cover everything?
No. You know? We could talk forever.
No. I think I think that's,
I think that really covers, you know, kind
of the current work that we're doing.
We are expanding
to,
children with PFD and dysphasia,
in our data collection because, ultimately,
I want to be able to profile these
kids in all of these ways so we
can better predict. If you have a specific
diagnosis that has a little bit more
consistency
to expectations,
can we provide
caregivers with better kind of predictive information?
Right?
So, yep, we know from
the literature that your child is going to
be behind in learning to eat, but they're
gonna learn kind of in the same order.
It's just gonna be delayed. So, right, you're
gonna do a little bit more texture modification
or give, you know, give them a little
bit more grace and what your expectations are.
Or,
no. If we can get your child in
and get some pretty intensive intervention, we think
we could, you know, resolve this quickly based
on what we know. So that's that's in
parallel while we're developing some of the norms,
really trying to establish the same profilings
to children with different diagnoses,
so that we can identify risk Yep. Earlier.
So,
cohort is that we,
have studied. Now we have two papers,
also coming out that aren't out yet, in
congenital heart. Oh, wow. So which is really
while congenital heart in and of itself is,
you know, a big diagnosis, it's a it's
a diverse group of kids.
So but really interesting,
in how their feeding develops, what their outcomes
look like,
and why I like this group a lot
is when we look at different developmental domains,
kids with congenital heart really have scattered developmental
profiles. It's not just a global delay.
It's not, you know, only a delay in
one area. We have some kids that have
no developmental delays. We have kids that have
global, and then we have kids that have
very specific, just a motor delay or just
a, you know, whatever.
So we're using that to help us understand,
how different developmental
aspects of a child drive feeding. You know?
Is it mostly motor? Is it mostly cognition?
Which ones drive it differently at different ages
Yeah.
Or a combination of things. So so that
is,
a group of kids that,
we have been studying,
in,
certain ways, and then we are working right
now towards
writing a grant so we can,
do longitudinal studies in case of the congenital
heart as well as typical. So we can
really understand
how this feeding developed. Yep. Why does it
go well? Why doesn't it go well?
Because we really need to know that, you
know, as as so,
yeah. So that's, you know, that's kind of
some of our next steps as we as
we move forward and,
yeah, kind of expand out on our data
collection. Yeah. It it's super fascinating too. Right?
There's just so much I've learned with my
son in the last few years. Yeah.
About, you know, he he it takes him
a long time to eat by mouth.
And what we're realizing is, you know, physical
therapy and occupational therapy are saying, you know,
he's using so much of his strength and
his energy and his calories in trying to
eat Yeah. That he's really not
retaining
many calories because he's burning them all. So
then when it comes to muscle building during
actual PT time, he's wiped.
Yeah. So these are the conversations that we're
having, you know, okay. So then do we
give him a tube feeding so that he's
got some energy to then
go hopefully do some walking and PT?
And there's just so many pieces to that
puzzle of, you know, like you said, is
it motor? Is it cognitive? Is it sensory?
Is it, you know, he's got all sorts
of different issues going on and, you know,
we just don't know the answer sometimes.
But No. For sure. But we do know
that, you know, nutrition
and being nourished
is nonnegotiable.
Right? Top priority. Yeah. Top priority,
and it drives
development, and it obviously drives growth, but it
drives opportunity.
Yep. And there's enough literature that when kids
aren't nourished and growing well in the first
one thousand days, that they are higher have
higher risk for neurodevelopmental delay later.
So it's so critical
to do that. But when we don't have
sensitive enough expectations in those first one thousand
days, we're we're doing a disservice to the
kids because we're not Yeah. We don't wanna
be alarmists and say, oh, we need to,
you know, treat everybody or get everybody in,
but we do need to, I think, be
a little bit more of an alarmist in
those first, you know, phases.
And then there's a lot of ways to
do something like tooth feeding. That was something
that we managed a ton on our on
our team
because there's GI complications and nutrition complications. And
then, you know, the dietitian can make a
great plan, but then
the psychologist has to say, well, yep. But
what's the form of that food and how
much are you expecting? And because it's gonna
take them too long to consume it, they're
gonna burn too much calories
to get the benefit from that. You know?
They don't have the GI tolerance to that.
They're resistant to eating. You know? All of
those pieces play
a huge role.
And, yeah, you know, deciding on using a
feeding tube is a is a big decision.
And I you know, in the pediatric world,
and I I was listening to your,
more recent podcast podcast about your experience over
the summer and making those decisions. And
it is a really hard decision, you know,
in the adult world. Like you guys kinda
said, it's it's thought of as, oh gosh,
avoid the tube at all costs. Yeah. Yeah.
You know? And in the pediatric realm, we're
like, it is such a tool,
and it's Yep. A a safety net, and
it allows a child and a family to,
you know, have positive experiences to have room
to grow and develop and gain skill.
So it is just a it's an interesting,
you know, kind of difference in in philosophy
almost.
And yeah. But there's also so many different
ways to to manage that. Right? To not,
you know, inhibit
still desire to eat, but getting enough to
nourish and not be feeding all day long.
You know, all of those things. So it
is it's a really complicated,
process, and you need multiple people on your
team to help you manage manage that. Yeah.
Thank you for sharing that about the first
thousand days. I had never heard that before,
but it makes you know, I try to
give myself grace with how how I navigate
my thud when it was
fresh out of the NICU. But, you know,
not you know, it's been ten years, and
I've you know, we learned a lot more
now than we knew ten years ago. But
it's it's
crazy to me now now to think back
of they just kept saying, oh, he'll just
figure it out. He'll just figure it out.
He'll just figure it out. And, you know,
I was just like, no. Like, he's not
gonna figure it out. Like,
we need help.
Yeah. So Yeah. And you know what? Caregivers
know. They know when they're stressed, it shouldn't
be that stressful to feed a a baby
or a child. Right.
And
that's one of the markers
of a child struggling to eat is when
a caregiver is actually stressed and expressing concern.
Yep. Overwhelmingly,
beyond any of those other intricate sensitive measures
that we can
establish,
where the disconnect has been is then what
do we do with that? And that's where
the primary providers hadn't had enough exposure, and
they're the first to say we don't get
a lot of education in feeding and feeding
developments. Growth, growth charts. Yeah. So when a
family comes to us, we're not really sure
what to do.
You know, overwhelmingly,
they will refer to speech. So we're often
the first to get a child,
when they're struggling. And so it's up to
us often to figure it out, figure out
what's going on. Yep. Is this the feeding
skill problem? Is there something else going on?
Who else needs to be on that team?
Yep.
So, you know, all of this is, you
know, to help everybody in the process. So,
you know, what the heck to do Yeah.
Ultimately.
Yeah. But it's interesting that, you know, just
when I just in conversation with people, you
know, people like, oh, what are you doing?
I'm like, oh, I'm a scariatologist.
I, you know, work with swallowing disorders. And,
know, it's like if you talk to, you
know, pediatricians
or nurse pediatric nurses or they're like, oh
my gosh. Can I get your card? Like,
we never know what to do with these
kids. And I'm like Yeah. Yeah. I don't
work with kids, but, yes, I will find
you someone that can. But it always surprises
me when, you know, I've had that happen
a few times just in the last few
months, and I'm just like, oh my goodness.
Like, it pains me that, you know, pediatricians
don't feel like they know what to do
with it. You know, they're like Absolutely. They're
having trouble eating. They're not on the growth
curve, but I just don't know where to
even send them or what to do. So,
you know, this Well, you know, like me
SLPs to market themselves better. Exactly. Exactly.
Well, and the other,
if everybody out there has heard about Feeding
Matters, which is, you know, the
organization that I've been a part of for
a really long time and a lot of
people out there.
But, you know, they they are a vetted
awesome resource and support for not only caregivers
and families but providers, especially providers that are
are getting more of these types of kids
and questions.
And,
there's good resources. There's a provider directory
on the website.
There's
programs for families to connect with other families
to,
you know, have shared experiences
and and
some mentoring. So, you know, that is definitely
growing.
And,
we are starting in a new initiative where
we're really trying to push feeding development
as its own developmental domain Yeah. In policy.
So,
that's really one of the new initiatives
that,
that we're working on through feeding matters and
to really push it out there in the
forefront that it's not embedded in all the
other developmental domains. It's its own. Yep. And
then, hopefully, that will start to establish
better education,
expectations,
and and awareness.
Yep. Awesome. Yes. For sure. Awesome. For sure.
I think that's a great point to end
on. Yeah. Thank you so much for you're
just a wolf of knowledge in all of
these areas and all of your clinical work
that you did, and and I just I
think it's so awesome to hear how you
transformed into this researcher, and and now you're
doing all this great work too. So I
hope it's inspirational to any SLPs out there
that, you know, may have this research itch
that they don't wanna scratch, but go do
it. So
go do it or, you know, partner,
check this out.
Yeah. There's just there's lots of great stuff
happening
in pediatric feeding as a whole. So lots
of exciting things to come. Awesome. Thank you
so much again, Amy. Thanks for having me.
Yeah. And that's a wrap for this episode.
As always, thank you so much for listening.
And if you'd like to download the show
notes from this episode, please visit swallowyourpridepodcast.com.
There, you can also sign up for our
email list so that you'll never miss another
episode.
If you do like what you hear, then
please subscribe and leave a review on iTunes
or share it on social media with your
friends and colleagues because that is what keeps
these episodes coming.
If you'd like to be a guest, share
feedback, or request a topic to be discussed
on the show, please email podcast@TeresaRichard.com.
Thank you so much for listening, and we'll
catch you next week.