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Experts including Dr. Barbara Haber and Dr. Elizabeth Rand provided detailed updates on Biliary Atresia at the annual BA Education Day. CHOP's Biliary Atresia Clinical Care Program has been caring for children with the liver disorder since the 1970s.
Sarah: So, as Dr. Haber said, I see the kids mostly in outpatient, outpatient villas, as I call it. And today, really that was actually a really great segue into why nutrition was so important. That's really what I was asked to speak about today — is to, kind of, focus on why we, kind of, harp on it, for lack of a better term.
So basically today I'm going to go over the basics of pediatric nutrition, why it's so important, what we look at, the different things we look at in terms of assessment. It's not just about weight and height. We'll talk a little bit more about fat-soluble vitamins. We know a lot that we give them every day. We might give different forms of them. Sometimes we give more of them. Sometimes it's nice to know exactly why we're doing all that. And to really, kind of, identify ways to optimize nutrition and growth, especially with the kids with biliary atresia.
So why do we need nutrition? Why is it important? Why do we care? The biggest piece is that growth primarily occurs within that first 0 to 3 years. You are really, really growing a body for life, for lack of a better term, which is why it's so important, even in kids. I see lots of kids actually who do not have biliary atresia, but for whatever reason aren't growing normally. The push is just as hard in these kids. You're actually building a foundation for the rest of your life. There're studies and studies and studies that show that malnutrition early in life affects you later on. It affects your psychosocial development. It affects how you do in school. You have more learning disabilities, all of those things, which is why it's so important.
This is one of the only times between 0 and 3 that you're really not only growing the size of your cells, but you're also growing the number of them. You're dividing all the time.
Myelination of your brain and your nerves, which is the sheathe that covers it to, kind of, protect it and to nurture it. That only occurs primarily during that first three years of life. It doesn't happen after that. You need fat to do that. Most of you guys know that's kind of difficult in this population. You need fat to help protect your brain for a number of reasons, but for this group, particularly, it's really, really important.
Development and cognition. Energy. We need calories. That's what helps us not only grow, but it also helps us smile and do all the other things that infants and toddlers do.
Repair — not only from injury itself in terms of what's going on internally with the biliary atresia, but also post surgical. There's been lots of studies to show that there's improved outcomes if your kid goes into surgery nourished. You're going to have a better outcome than if your kid goes into surgery malnourished.
So the big issues are increased needs. You have increased energy expenditure. You have low and absent bile in the intestine, either you have a little bit, or you have none. And basically that's going to cause fat malabsorption, which means that those calories that you get from fat are not going to get absorbed, and those things that are in those fat cells, like the vitamins that you need to absorb, you're not going to. With that at the same time, concurrently, you get decreased intake. A lot of the times they're in hospital. They're in an environment that's not their normal environment. They don't want to feed as normally. They're not going to feed as well for the nurses as they do for me. That kind of thing. That all plays into a role of it.
And also having, you know, a larger liver is going to impact your satiety, it sits right there on top of your stomach. You're going to get full more easily. You're going to have more issues with vomiting. These are all things that we have to then address. When kids vomit a lot, they tend to not want to eat as much because they know in their tiny, adorable little brains that when they eat, they vomit. No one wants to do that. And that causes a lot of, lot of problems.
Malnutrition particularly, again we already talked about how that it increases post-transplant morbidity, mortality. It also increases whether or not you have surgery. So that population that's not having surgery, it's still an affect. It also again decreases the growth long term. And you see a lot of stunting, which is your reflection of long-term malnutrition later on in life.
When we're looking at growth, we're really assessing growth compared to either your individual child over time, but we're also comparing them to the standard group of peers. Basically, we're looking at degrees of malnutrition. And the way that we do that is we're looking at weight, height for length, and skin folds.
So the issue with weight is that weight is really affected by hydration status. So, if you have ascites and you're holding onto fluid, your kid might come in the clinic, plop him on the scale, the weight looks fantastic. Woo-hoo, the weight's up. Everyone's excited. The parent, you guys do a little dance, and everyone's happy. But the fact is a lot of that — it's water weight. It's just in there in the belly. And there's times you parents, you can look at your kid and go, My kid's not healthy. And you know that without looking at that number. Because the arms are skinny. The legs are skinny. Because of that we use skin folds as an assessment measurement.
I jumped ahead of myself obviously. So weight is really reflective of that short-term nutritional status and wasting. It is a very frustrating measurement to use in this population, in my opinion, because again you know — up, down. This is that population where, you know, they have a wet diaper, and they actually do change that scale. It's a frustrating piece because so much of that weight is fluid related. And again it can be affected by hydration. So when your kid's dehydrated, they weigh less, that kind of thing.
Length is really what we're looking for that long-term nutritional status. So your body will protect your head at all costs. So when you're looking at weight and we're looking at growth, if we see that weight and it starts to, kind of, maybe not follow that curve as well, and we might start talking to you about — Well, we're getting a little concerned, you know. But it's weight, so we're not quite sure. If we start to see that length then follow suit, that's a really good indicator that your body's not getting what it needs.
When your body doesn't have enough to go around for all the pieces and parts, it starts sacrificing. Weight goes first, height goes second. Your head is the last thing. That's why we do the head circumference with the kids. We're looking to make sure that that head is growing as best as it can. If that head circumference starts deedering [sic] off, I will be talking more aggressive nutrition with you. Because that is what you're looking at in terms of long-term development. And once that starts to happen, you know why it's happening. It's happening because your body is not getting enough calories, and it's now having to sacrifice not only weight and length, but it's starting to sacrifice what's going on with your head.
And, yes, genetic potential and hormones and all that stuff does affect it, but trust me, when we're talking to you guys we know what we're talking about in terms of looking at growth. But I do get the, "Well, my mom is short." I know.
Skin folds are really quite different, and thankfully we are using them as an assessment. I got really frustrated, you know, when you're looking at a weight because it's just not telling you what you need to know. What I need to know is how is your lean body mass doing? How is your fat stores doing? So what we do is, if you've seen it done sorry for the repeat, but the midline circumference is really just calculating the area of your arm. We just kind of take the — we measure from the edge of the bone here to your elbow, make a mark halfway. Right above that. Put the tape around it. Get the length. That's how we — so we know their circumference.
The bone — all bone, pretty much — is relatively uniform in terms of its width. So we, kind of, know already that part of the equation. So all that's really left is figuring out how much fat do you have? And how much muscle do you have? So it takes someone who has experience doing it. The research definitely shows that if you have the same individual, not like group of individuals, the same individual doing it over time, you know a little bit better. What we do is we, kind of, feel there for where that lean muscle ends. It is a little subjective, not going to lie. But, if you have someone who's doing it constantly, they know what they're feeling for.
Once you get that part done, you then are going to be pinching that fat store there. You're going to then compare those to norms for age, for gender, and for age and then what I'm looking for really is, there's not, it's not quite the same as the height and weight percentiles in terms of that. The ranges are much bigger. And really what I'm looking for is how are you trending? Where are you going? And that gives me so much better information in terms your body and how you're growing than just your height does. Because, if your weight keeps going up and your liver keeps getting bigger and bigger, it's not doing me any good to figure it out.
This is a relatively easy test, not so much for the babies. They really don't like it. But, you know, it's a relatively easy thing. The pinch does not feel that great. But it doesn't hurt. It's just, you know, it's a little pinch, but really does tell us so much more information because we can then calculate from there. What's your fat percentiles like? What's your lean body percentiles like? Lean body mass and fat mass are two things that you need to continue to, kind of, grow. And, if we start to see those stores depleting, we know why. They're depleting because they're not taking as much in as you're expending, and your body's using your own stores.
So fat-soluble vitamins and the deficiency, or FSVs as I call them, because it's too long to say fat-soluble vitamins.