The Importance and Challenges of Nutrition

The Importance and Challenges of Nutrition

Elise Turner: Hi, I'm Elise Turner. I am a parent of a cardiac kid, and I'm a member of the Family Advisory Council at CHOP'S Cardiac Center.

Chitra Ravishankar, MD: Hi, I'm Chitra Ravishankar, one of the cardiologists at the Children's Hospital of Philadelphia. I have been there for almost two decades now. Nice to be here.

Elise Turner: Thank you. Thanks for taking time out of your day to do this.

Chitra Ravishankar, MD: Pleasure.

Elise Turner: What's CHOP doing in this area to support families of CHD kids who have feeding issues?

Chitra Ravishankar, MD: You know, it's a real problem as I'm sure you know. Many of our patients end up going home on feeding tubes. In fact, there are so many studies that have shown nearly 50 percent of these babies that need surgery after, immediately after birth, end up going home with feeding tubes.

Over the years, you know, we've had many initiatives. One of them is using our feeding program that's available for the rest of the hospital, using some dedicated speech pathologists to help our families and children, you know, overcome this problem. At the moment, we don't have anything that's specifically dedicated to our cardiac kids, but that's the one thing I am hopeful we can launch in the next six to 12 months.

There is a program that's being led by the National Collaborative. I'm sure you're familiar with NPCQIC. It's the National Pediatric Cardiology Quality Improvement Collaborative and one of their goals is to make sure that, their focus right now is on the babies with single ventricle heart disease, you know, the ones that go home with the monitoring program. But their hope is by one year of age that majority of those babies will actually start eating by mouth.

And my dream is to get this program launched in the next six to 12 months. Start small and then eventually expand it to, most of our patients.

Elise Turner: That would be great. So not, it'd be specific to cardiac kids.

Chitra Ravishankar, MD: This will be dedicated to the cardiac kids.

Elise Turner: Yeah. I mean, I know these cardiac kids have special needs because they have to, they have to get the right nutrition in order to be strong and, you know, support all their organs and get them ready, often get ready and big enough for a big surgery.

Chitra Ravishankar, MD: Exactly. And also you have to also be sure that it's not only the nutrition, but it's also hydration. Especially, it's much more critical in some of our patients than others. For example, you know, some of our kids, if they are dependent on what's called a shunt to get blood flow into the lungs, you know, those babies get dehydrated, they can really get into a lot of trouble.

So that patient population, in particular, it's not just providing nutrition, it's actually making sure that they get enough fluids in.

Elise Turner: Oh, okay. That's interesting.

Chitra Ravishankar, MD: Yeah.

Elise Turner: Yeah, I guess, you know, the feeding tube is kind of seen as a, it's a necessary evil almost. I mean, it's a challenge and it can be stressful for parents, but it's also, we have to understand, it's also, critical and for the hydration, for nutrition, get them ready for surgeries.

Chitra Ravishankar, MD: Make them strong.

Elise Turner: Grow and strong. What kind of unique challenges do cardiac kids have with feeding?

Chitra Ravishankar, MD: I wish we, I knew the answer to that and I wish it was a simple answer. It's something we've been trying to understand for as long as, you know, our surgeons and cath doctors have been providing therapies for these patients.

And I don't think it's one thing and it varies from babies to babies and or conditions, I should say. It seems some of this starts, you know, even before they're born. That perhaps, you know, some of these kids, intrinsically have issues with swallowing and also the other issue is coordinating, you know, breathing and swallowing.

And then in some of these kids there is an actual injury or stunning to one of the nerves that helps with coordination of the vocal cords. So that can have an impact on how these babies do. And the other thing is, you know, I think sometimes it's also this negative feedback loop that they get, you know, like you give them a bottle and they don't take to it very well.

But, you know, every parent and every caregiver for that matter, you know, you really want those babies to eat by mouth and depend less on the feeding tube. So you try and, you know, give them more and more of it. And it's, and the baby's saying, I don't like this. You know, you get an aversion and then it's sometimes the only way to stop that cycle is actually by saying, you know what, I'm going to get, take a step back.

I'm just going to use the feeding tube and let the baby's, you know, like feeding aversion resolve, and then we can solve the problem. So sometimes I think that's what you need to do.

Elise Turner: What kind of therapies do these kids need who might have a feeding tube and are trying to eat by mouth?

Chitra Ravishankar, MD: I think the feeding specialist or the so called speech pathologist is really critical in making that happen.

And even if kids are not eating by mouth, it's still important to have the speech pathologist involved in the hospital setting. And I think even as an outpatient, actually more than in a hospital setting, because it's, there's something different about not being in a hospital and being in a home environment and just making sure that even though they're not feeding by mouth, but they still maintain those feeding skills.

So I think the speech pathologist plays a big role. And I also think other therapies, you know, making sure, because if the baby, not just grows, but develops normally, that the feeding skills will also develop. The other person, I think, or people who are really critical is maintaining contact with a dietician who can guide, you know, how to change feeds as these babies get bigger or, you know, are there things that we can do to optimize their nutrition so that they get in the best possible shape, you know, whatever the next step is. Whether it's for their next surgery or just get in good shape and you're, once the babies are a few months older and they're circulation is more stable, we can actually challenge them and say, okay, you know, maybe we can hold a couple of feeds and let, maybe you'll get hungry and you want to eat more. So I think, you know, those are the some of the tactics we can use once they get like beyond those first three to six months of life.

Elise Turner: Being hungry and wanting to eat is such a natural thing for us, you know, and I guess, so babies that have, you know, be a feeding tube or they're being fed a different way, they don't experience hunger.

Chitra Ravishankar, MD: Right. You know, that satiety, right? Like they don't have that feeling of hunger and that's something, you know, we have to teach them how to acquire that skill.

Elise Turner: What's a piece of advice that you can give a family that's dealing with these feeding challenges?

Chitra Ravishankar, MD: A couple of things I would say is it's, think about it as another medication.

It's being prescribed because it's really necessary. It's necessary for hydration. It's necessary for nutrition. It's necessary so that the baby can grow and get ready for the next stage. I get it at so many levels how challenging it is for these families, to go home with a feeding tube, and it seems like it's like a 24 hour, 24 seven, right?

It's you never get a break, but, there is a light at the end of the tunnel. This is not permanent. I mean, I cannot tell you they've taken care of so many patients where they go home, not taking anything by mouth, right.

First six months of life, they take nothing by mouth. And five years later, you can't stop that kid from eating.

So I sincerely believe there is a light at the end of the tunnel, and once these babies are in a more stable state, we can actually challenge them and get them the necessary help they need so that they can eat by mouth. And that really has to be our goal. And it's something we can achieve in a majority of our patients.

So the advice I would give to our families is, be patient. It's not, this is not permanent. It's going to get better.

Elise Turner: Great. Thank you so much.

Chitra Ravishankar, MD: Thank you.

Elise Turner: I appreciate your time today.

Chitra Ravishankar, MD: My pleasure too. It's great talking to you. Thank you.