Gastrointestinal Issues and Feeding Tubes in the CHD Community (Remastered)

According to Corience: An Independent European Platform on Congenital Heart Defects, "As many as 40–60% of children with congenital heart defects are undernourished."
https://www.facebook.com/HearttoHeartwithAnna/
Healthy babies double their weight in 6 months; however, children with congenital heart defects put on weight more slowly. Their growth is also affected by the heart defect.

Why do children with congenital heart disease not grow as other children do? The answer is because the heart defect makes them need more energy. Their diagnosis might also complicate feeding for several different reasons. Heart failure makes them too tired to feed. Some of them might have trouble keeping down their feeds. Others seem to have difficulty in coordinating breathing and nursing.

This episode will investigate what kinds of equipment might be needed to help a babe with a congenital heart defect if that baby cannot nurse or feed normally. Listen as one mother shares her experience with her baby -- who needed a feeding tube. We'll also talk with a clinical psychologist who specializes in early infancy and childhood as well as eating disorders and tube feeding. She works for the NoTube Limited Liability Corporation, which was founded to help children all over the world to overcome the severe condition of tube dependency. Discover how one mother and a company over six thousand miles apart helped one little boy wean successfully from his feeding tube without ever leaving home! The show originally aired on 7/8/14. Please keep in mind that prices quoted may be quite different now!

Links mentioned in our show:

http://www.corience.org/living-with-a-heart-defect/parents/heart-childrens-health/feeding-problems/

(Corience: An Independent European platform on congenital heart defects: For patients, parents, doctors, and scientists)

www.notube.com (NoTube) To write to someone at NoTube, use this email: support@notube.com

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Transcript

spk_1:   0:00
way. Welcome to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH D or congenital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is Anna Gorski,

spk_0:   0:32
with Second Season Apart to Heart with Anna, a show for the congenital heart defect community. Our purpose is to empower members of our community with resource is support and advocacy information. Today show is entitled Gastro intestinal Issues and feeding tubes. In the congenital heart defect community, nothing is more fundamental to parents than feeding their babies. Babies form with severe congenital heart defects, often like to stamina to feed. Normally, their bodies were working so hard they're using more calories than they can possibly take it by mouth. For this reason and others, many of our babies with congenital heart defects are unable to feed in the traditional manner. Instead, some of our babies must have tubes placed in their noses and down into their stomachs or surgically put into their stomachs or even into their intestines thes feeding tube to require much care and are a constant reminder that our babies, they're not healthy. While our baby's heart defects are usually hidden from view, nothing is further from the truth when dealing with a baby who has feeding issues. According to Korean, an independent European platform on congenital heart defects, as many as 40 to 60% of Children are congestive. Heart defects are undernourished, healthy babies double their weight. In six months. However, Children with congenital heart defects put on weight more slowly. Their growth is also affected by the heart defect. Why do Children with congenital heart disease not grow his other Children? Dave? The answer is because the heart effect makes them need more energy. Their diagnosis might also complicate feeding for several different reasons. Heart failure makes him too tired to feed. Some of them might have trouble keeping down their feet. Others seem to have difficulty in coordinating, breathing and nursing. The truth of the matter is that many of our congenital heart defect survivors end up needing an N G tube in N J tube, or G tube. These tubes enter either the baby's body, be it the baby's nose, stomach or intestines. And there's no way to really hide the fact that a baby has a feeding tube. And it's something that causes parents concern all day, every day it feels wrong to be unable to feed one child. The babies with severe congenital heart defects often need the calories on Lee to feeding can supply. As upsetting as it is to feeding can be a godsend. This is why our topic today gastrointestinal issues and feeding tubes in the DHD community is so important to discuss this topic. Our guest today are Christie Sanders and Sabine Parish. Check. Christie Saunders is a wife and mother of four Children. Her third child, Been. It was born August 24th 2012. He was undiagnosed with any heart conditions in utero, much to Christie and her husband. Shock and dismay When then it was 24 hours old. He was diagnosed with hypoplastic left heart syndrome. He had his normal surgery at five days of age and had a typical bumpy recovery at five weeks old hander went and missing fund application and G two placement due to severe gastrointestinal or G I issues. After many tears and much struggle. He was successfully weaned from his tube when he was 18 months old. Welcome to heart to heart with Anna Christie.

spk_2:   3:48
Hi. Thanks for having

spk_0:   3:49
me. Well, I'm so happy to hear that. Then it has been successfully weaned, and I have a 1,000,000 questions for you. You said that at five weeks of age, then it had to have a G tube inserted. Can you tell us why he needed a feeding tube and why the doctors prefer to have a G tube instead of an N g tube?

spk_2:   4:08
Yes. Well, like you said, he has hypoplastic left heart syndrome and who wasn't diagnosed in you grows. So we were really very uneducated of everything that would entail. Now, the viewers all know that heart defect can cause severe reflex and caused the seats not stay down cause mal nourishment, because too much energy is being taken up by just keeping the body alive. And the gut is not getting the proper fusion that it needs to function properly. And not all kids have all issues that Bennett got Bella. He draw, and he ended up with pretty much every stomach issue that could happen. He had Bill a gastric emptying. He had severe reflux. He had a little aversion from having a tube down his throat for breathing after his surgery for so long. And we were heading into flu season in the hospital. Five weeks with his surgeon just said, We need to do it We need to do to get this kid out of here so you can get home and start growing and thriving. And again, Like I said, we were pretty uneducated on everything and we were trusting are doctors, and not that. I think that it was the wrong call, but we just did exactly what they recommend it. And so they did the Nissenson duplication, which basically closes off the stomach at the top end so that they can't vomit their food up and then lose those vital calories. And they decided to do the Jews who are hospital on Lee does G tube they don't send home with the energy or the N J tube. I think that's pretty common, actually, that hospitals will refuse to send their kids home with and N J c the nostril. They believe that it's too difficult for the parents to dio I've now learned otherwise. We've met many, many, many families that are sent home without having to have another surgery. But you were uneducated, like I said, and we didn't even notice Question that or to ask that question. So that's why he ended up having a surgical placement of his teeth field.

spk_0:   5:59
Wow, He went through an awful lot. Having the gang and not being able to keep his feet stand in the aural aversion It's so much to deal with. I can see why the surgeon just wanted something that would be more permanent, that you wouldn't have to worry about so much. My friends who have Children who have had the n G tube, they can get their anybody fingers wrapped around the tube and pull him out. No parents do. You have to become pretty adept at being able to place it back in. And Children are pretty tricky, even when your baby, but they can D'oh! Yeah, so it sounds like this was a huge blessing because I do believe that babies can grow better when they're at home. I think you need to be in a relaxed environment, and I would not say that a hospital is a relaxed environment,

spk_2:   6:46
for sure. Definitely.

spk_0:   6:49
It sounds like you really trusted your surgeon, which I think is a really critical relationship. You have to trust your child surgeon. I mean, we're putting the most precious being in our lives in their hands. So if you don't trust him, I think that a bad thing. So, yeah, it sounds like you trusted him. But how did it make you feel when they said okay, we have to go back in and not only for the g tube placement, but also to do that Mrs. Fund implication. How did it make you feel?

spk_2:   7:17
Oh, well, well, I'm actually I didn't even mention he also had a pilot classy. With Coco, he could drain faster as well. It was so terrifying. We just didn't understand anything. We weren't connected yet on Facebook with other families in our condition. And it was really, really scary because there was some information that you use Google, which I don't recommend about how dangerous it was for a heart, maybe to go under anesthesia and how some hypoplastic left heart didn't make it through a common de pube procedure. And we were so terrified that we're making our decision constantly, and we still had to trust that, and we were being guided properly on all of it. In hindsight, I do think that we were at the time. It was so scary trying to make decisions. And, you know, the hospital does they lean a lot on the parents. What the parents are feeling is right for their kids, at least at our hospital. And that was a lot of pressure, a lot of burden on us. And we were so relieved when he came out really the same as he went in. It was such a relief. And it wasn't all moved after you've had it all that in unions. But it was good to have that done and over with, and not to have to question our decision anymore.

spk_0:   8:27
Yeah, that is one good thing. I think about being almost in an emergency situation where you don't have much time to do the research. Really Don't have much time to taking us yourself, either. You make the best decision you can at the time you put your trust in the people taking care of your child and I don't know about you. We have a lot

spk_2:   8:46
of prayers. Yes, yes, yes. Work shores. We were just trusting that we were gonna be guided by the Holy Spirit in our lives. You know, God was gonna have it go the way it needed to go, and we really trusted that.

spk_0:   8:59
And I think that's what a lot of us have to do because we don't have the information. Most of us don't go in there with a degree in medicine where we've heard of this even. I mean, for a lot of us, this was the first time to even hear about hypoplastic left heart syndrome and all of the different kinds of complications that can go along with this. So he did get the feeding tube. We've got past all of that. You got home. What was the biggest challenge that you had with having the feeding tube with Bennett?

spk_2:   9:27
Well, for us, he was very uncomfortable. Not because of the YouTube, but because of all of this gastrointestinal issues he had. And this in that which crossed, we couldn't vomit. But then in return, it caused gas quote. He couldn't get up what was going on the stomach and until we could get a happy medicine regimen for him. It was tears for the entire family. Do every feed. My husband would have to pat his back while I was saying to him just to get the food into him and get through it and then you have to do it again two hours later and then again in two hours later. It was totally consuming. And even when life became more normal and we were able to take him out and feed him with two, it was terrifying. It caused my older kids have to stop. Everything revolved around the G two for the entire time that he had it. And it was heartbreaking that my son with a party that couldn't just have a normal life between surgeries, knowing that he was headed with this horrible heart defect. Can't you just live normally when he's not having surgeries and have a heart problem? It was just so hard for us to wrap your brain around the fact that this was his life. It was horrifying.

spk_0:   10:33
Yeah, that's not what you're expecting to deal with. Especially since you had already been a mom to two healthy Children. You knew what a flight to take home a healthy baby. And this was way out in left field. I'm sure you felt broadsided. And you had two other Children to take care of On top of that, right? So how old were your other two Children?

spk_2:   10:56
My daughter was five at the time, and my son had 1/3 birthday a couple of days after Bennett for surgery. Oh, yeah, they were really young. Yeah. Yeah, it was really hard for everybody. Everybody

spk_0:   11:11
I can imagine. So where the Children somehow able thio help you at all? At least as far as trying to make the baby smile or distract the baby? While some of this was going on our did they just have to go into another room while you were doing the feed?

spk_2:   11:29
No. We wanted them to be involved, be allowed them to understand what was going on in the seriousness of all of it. From the very beginning, my daughter definitely draft it. My friend didn't, but that's okay. He does now. So no, we left Cindy there. We wanted them to be around that and to see his life that they understood personality and all the things that would come from it. So, yeah, they were always there, and so we would let him seeing them and try to distract them. And they were. Often they still are. They all have a very close relationship.

spk_0:   11:57
I think it's amazing the way Children can rise to the occasion. Joey was three when Alex was born, and he was the best person I could take along to any of the doctor's visits or anything because he would hold Alex and he would make funny faces at him. And I think I felt a little safer with Big Brother around. It was very clever and for him to have Joey around. So I feel very, very blessed that I had Joey to help me with Alex because he really did try to normalize, say, you know, when all this stuff was

spk_2:   12:33
great, right? This is her brother and that's just who it is, and it's fine. And when people would stare at the TV didn't bother my kids. They would even say, Oh, he has a heart defect. They just it was normal to them. He has half a heart. He's my daughter, tells everyone that this is that he has half a heart. He's amazing. Is it is It doesn't feel normal because,

spk_0:   12:55
yeah, it does. I think having other Children around too. Like I said, to normalize it or to make it okay. I mean, that's just what Bennett came with you. He came home, I came home with all this equipment and it's OK. Mommy's taking care of him. Daddy's taking care of him will be OK. You obviously provided so much of a good foundation for them that they felt safe despite having this very unusual situation occur to them.

spk_2:   13:25
Yeah, that was the boat. So

spk_0:   13:27
way, Way. Always hope that our Children will grow up to be friends and love each other. Everything was dealing with this tube, and every two hours you're having to go through this. It must have been exhausting. How did you find out about no tube or what did you do to start to want to wean him from this G tube?

spk_2:   13:51
After we'd come home and kind of settled in the tear? Stop pulling as much. We got connected with a lot of support group, but I really do highly recommend there's good and bad because you're seeing the bad and the good on the support group, but we were getting to know and I'm a researcher. I want to understand. So I had a lot of catching up to do. So I was on the walls and I was reading about different weeds in different American ways of doing things. And basically we got hooked up with a feeding therapist really early on that we love an occupational therapist to therapist. We were doing a lot of work, and we were told, This boy is going to eat. He's got two older siblings. He's going to want to eat. You've got good parents that are nurturing and he's going to eat. And the honest, ruthless he just didn't he didn't want had an aversion at this point. He's stubborn, which is probably what going to keep him going and his heart picky because he's a minor. But he was mad. It hurt him to eat. He didn't understand why we were doing this to him. He didn't want to have a yogurt spoon shoved in his mouth. He didn't want to taste if you didn't want to do it. Once he got comfortable with the G tube and it wasn't painful for him anymore. He didn't want to try something else. And as he's gotten older, I see that personality and him get stronger. And I understand that because he went through a lot. And so I heard telling our therapist, I don't think this is gonna work and he doesn't want to eat. And so finally I started following my gut a little bit more and with the support of the therapist to know that they are going against that. But I kind of started like I am with my son 24 7 I know him, and I am beginning to look into other things I read about know too a lot, actually over the course of the time that he had had the key to. But honestly, it sounded too good to be true that in Austria they were doing it a certain way that they're not doing it really in America too often, yes, it works because they're weaned and they're weaned in 3 to 6 weeks and they're driving, and it just not well I would feel about this if this is true. I mean more people would do it, but I think because in Austria is not the first thing that comes to people's minds. And we want to trust What are you here are telling us we wanted to work here. We don't want to have to go out and search and have to be put on our own. And that was kind of what I had to do. I had to kind of bring it on my own after I got my husband's support and say, I really want to look into this and I followed my gut And I really said, You know what? It sounds like this is what then it needs. A lot of people said, Well, maybe not. I mean, it's the hunger wean and I said, no, they know what they're doing That face, I trust them. And then it was weaned. He was completely went from 100% DC feds to, ah 100% not betting gaining weight in six weeks. And wow, it was even make a living. Yeah, and we were told it probably won't work out the way you hoped. But don't get discouraged. You know, we have the court. I really put my face on these people and I really put my face and then that if I expected more of him that he would rise to the occasion. And he did it. He was. So what? Happier, so much happier? I never questioned it for a second that we did the right thing. So that's how we found them was through the support groups, basically. And then I looked into it more and more and really did my research.

spk_0:   17:03
So in six weeks, his life totally changed.

spk_2:   17:07
Yes. Yes, Completely for the better. So much for the better.

spk_0:   17:13
And for you, too. I mean, really, for the whole family, this was not just a means of feeding Bennett. This was a life survival device. And they pretty much dominated your life.

spk_2:   17:27
Yes, well, it has served its purpose. It had saved Bennett's life. They had gotten him through to the second surgery. So it was time. It was time to let him have some power back over this portion of his life.

spk_0:   17:38
Okay, so there was another question that popped in my head was he had the Norwood procedure. Hey, suffered all these gastrointestinal issues and then he had the G to place. Did he gain weight? readily on the G tube.

spk_2:   17:53
No, he didn't. Actually, it was still a huge struggle for him. But he did gain weight consistently and honestly. Even with the G tube, I started following my get a little bit and I started putting him on a feeding regimen that I thought they worked for him. And it wasn't exactly as many calories as the doctor would have liked. But he was gay. Me, He trusted me as a parent. And I think that was predicting is that I was involved. I was loving and nurturing. I would ask the right questions. I wasn't hurting my son. So they trusted me in a lot of ways to make some decisions. So I did. And so he gained weight. He didn't gain a massive amount of calories because I chose to keep him comfortable instead of pumping him full of too many calories and making him more miserable. He didn't gain weight. And that was something he couldn't. D'oh! Without this, You two

spk_0:   18:39
bright right? How old was he when he had his glen? He was tormented by direction. Quinn.

spk_2:   18:46
He did? Yes. He had it when he was four months old. So He was actually a little younger than they like, but it was good once. That was out of the way, probably about two months later. Things started kind of falling more into a normal pattern for Bennett, and that's when he really started feeling better. It took a while, but he's getting more oxygen. I think is really what happened, and he was doing a little bit better after that. Go

spk_0:   19:09
well and then you gave him a full year on the G tube to recover from those two surgeries. Within four months of his life, he had two major open heart surgeries. The GT did provide him with the calories that he needed, but I think it's interesting that you felt that you needed to trust your gut. I wish more moms would do that. We do know our babies more intimately than anybody else doesn't. We are there with them 24 7 So yeah, but that's wonderful. So he did gain enough weight that then you felt like, Okay, it's time to start the other programs. Yeah, why wouldn't you give to parents then who have babies with heart defects who also have G tips and who may have been in the same place that you were in or who may be currently in that place.

spk_2:   19:55
I think what I want to help parents is you do it. Do you think is best for your baby? And sometimes that is just sitting. And that's why we waited a year because I wasn't ready. Thio do something that I was gonna really have to venture out on my own. I needed to take the time to really get my brain where it needed to be and to be then it driving. And I needed a full year to kind of recover from sort of the emotional trauma that had happened. And I think that it needed some time to just live, and we were in a pattern with you, so I would feel parents don't get discouraged. Don't feel like I should be doing more. I need to figure this out now. But on the flip side, when you start feeling like okay, there's more out there to this, I can do a blended diet. There's still many beings even apart from G to Weenie that could make your baby's life a lot better. Trust your gut and then Sometimes what works for us isn't gonna work for you. So don't get discouraged. That is not going on the same time frame of somebody else. But know that you do know your baby and look at the Q's and love on them, and they're gonna thrive under your care. And so whatever you decide, it's gonna be okay. Because if you decide, Oh, we're gonna stop a lean and go back for a while. That's good, too. But don't I feel like you're and like you can't look in the options and that your baby isn't strong enough to do it? Because I know, having seen now, many heart babies, all of them are going to rise to the occasion when it's asked, is that they're amazing. Amazing Kids and moms are amazing, too, because we've all been through a lot with all this through a lot. So that's my advice is yes. Follow your gut, don't be discouraged. And don't be scared to look into things and to go out and kind of day. I'm gonna take a step here apart from my team that I think is right, because we're so long, it's trauma that your team. Your medical team is your lifeline. But wait, we're here. The mom, You're the mom. Your husband is the dad and you guys. So you know your kids and it's okay. It's okay to be a month apart from your heart scene after a while.

spk_0:   22:01
I love that I love that advice, but I think it's important for us to be part of that heart team. But I also do feel that there is a situation where we're dealing with this 24 hours a day, seven days a week. We don't get a break from this. And so you're right. It is really our responsibility to take charge and to determine. I think he's ready. I don't like the approach. I don't like that approach. I want to try this approach. And you know what? If you had tried it for several weeks and it didn't work, you probably wouldn't be in a much worse place than you were before. And they grab it will be ready to try something else.

spk_2:   22:37
Exactly. Exactly. And that was where I figured. You know what? It was worth it. We need to give this a shot. And and I wasn't shocked that it worked for us. So then you then it was ready. But had it not been on me, too. We're just We're gonna keep trucking along on the life on the road that we've been given.

spk_0:   22:54
Well, thank you so much, Christie, for coming on the show and sharing so much great information with us. But now it's very pressure to go to a commercial break. But don't leave because coming up have a clinical psychologist who specialized in early infancy and childhood as well eating disorders to feeding. Find out what company she works for and how she is helping people all over the world without ever leaving Austria When we return to heart to heart with Anna

spk_4:   23:22
Anna Dworsky has written several books to empower the congenital heart Defect or C H D community. These books could be found at amazon dot com or at her Web site, www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and as other books. My brother needs an operation the heart of a Father and Hypo Plastic left heart syndrome a handbook for parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more.

spk_0:   23:59
Welcome back to our show. Heart to Heart with Anna, A show for the congenital heart defect community Today we're talking with Heart Mom Christy Saunders, a clinical psychologist, being marry shek about gastrointestinal issues and feeding tubes in CHD community. We just finished talking with Christy about her experience of having a child with congenital heart decides who needed to have a miss in front application and GP placed for feeding and how she was able to successfully wean Bennett from that feeding tube. Now we will turn our attention to being membership. Be merry. Scheck is a clinical psychologist specializing in early infancy and childhood, as well as eating disorders into feeding. She works for the No Tube L. L C, which was founded to help Children all over the world to overcome the severe condition of tube dependency. The ultimate goal of the multi disciplinary team is to teach the child how to eat and to finally remove the feeding to. Furthermore, no tube helps Children with all kinds of early feeding or eating behavior disorders. No tube offers tell a medical coaching as well as on site treatment options. The program Graz Model of Tube Weaning, has been developed at the university Children's Clinic Grog by Professor Marguerite Done It Cheer and Peter Sheer during the last 30 years. No to be evaluated. Its work on a scientific level. Numerous publications provide a success rate of over 92%. Wow, that's really a fabulous statistics. So thank you for coming on heart to heart with Anna Sabine Hello from Austria. Thank you so much as an invitation

spk_3:   25:37
to speak in your show.

spk_0:   25:38
But I'm so excited to be talking from somebody in Austria. My husband and I visited Vienna earlier this year, and it is a beautiful country. Oh, yes, it is. Well, I was so excited to hear that Christie was successful with this program. No tube and I had to learn more about it. So can you tell us a little bit more about how you got involved with no tube And what Tele medical coaching is?

spk_3:   26:07
Yes, of course. You're in my time of university. Even I was starting psychology. I got to know a process. A market to me chair and Professor Peter share what it found us off the grass model of Cuban me. They both worked at the University Children's Hospital in cars in Austria, and they were focusing on eating disorders, especially to dependency since many, many years, they mean to thousands of Children off the feeding tube so new our Children and their families from all over the velvet kid expected helping que greening People traveled very, very long distances, for example, from the U. S. From Trieste, all straight, quite a long distance and the trouble with the medically fragile Children to get some help. Expenses were enormous. The waiting list at the clinical cried long. So when I finished my studies, I got the chance to work there, and I was really amazed that a whole model and how successful the training courses spent many Children who were considered this unreasonable that completely you print within 2 to 3 weeks. So in 2009 there was a you to help families family. He's a cute child, did the Internet and it all started office, some coaching email on the feet. That was amazing in a number of Asian school recall. You So because of this in 2000 then no tip Ellis even funded a spinoff company of the Medical University of Cross offer specialized medical coaching for Children with your dependency and other early eating behavior disorders. So we work with an online ticket system which has been created specifically for our purposes. And the coach, the parents off, stupid Children off Children, even behavior disorders on a daily basis.

spk_0:   27:55
Oh, holy, do it my hourly basis. You actually communicate with the parents on a daily basis?

spk_3:   28:03
Yes, we do. Mostly 23 times a day. You are around. We don't have any holidays, so it's 365 days a year here, Really? Before our patients and parents. Yeah.

spk_0:   28:17
Wow, that is so impressive. And are you actually contact the parents by email? What do you do? Are you calling and say OK, it's now noon your time. How are you doing what you do in these conferences?

spk_3:   28:35
Yeah, well, we have two special last decade system the parents lock on. Well, a three from the medical team to and there we have a recommendation about the child about the medical history and all the stuff off duty pales on. So we give advice on a daily basis on reduction off your feet on howto feed the child which food toe get to the child. The other last video. The parents have the possibility to share their concerns and fears 24 7 with us.

spk_0:   29:10
Wow, that is really impressive. So the parents can actually videotaped their child eating or having certain problems. They can share that videotape with you if you're in California. I looked it up online. It's 6000 miles from California. Like you said, it's very expensive to take your child all the way to Austria. But instead of you have to do that, thanks to technology, they can share it almost instantaneously with you and say, What are we doing wrong or what do you think is going on here? So is that what's happening?

spk_3:   29:43
Yeah, off course. That's what's happening. Child stays at home, and it's familiar environment. Um, it's much easier between a child at home than in the hospital because it was not the natural environment for a child.

spk_0:   29:58
Wow, it almost seems like you were groomed to do this since you met the founders while you were in college. and you saw with your own eyes what it do to help so many Children. Wow. So you have this very specialized background that enables you to work with the parents. And how old are the Children that you work with? Because he said that there are Children with other kinds of feeding or eating behavior

spk_3:   30:26
disorders? Yeah. So, generally, the three Children from H zero to which 18 or even had a 20 year old guy read off. Didn't you buy that complete? But most of the Children are about 1 to 2 years of age,

spk_0:   30:45
okay? And that's what I would expect between one and 2 to 92% success rate. How many of the Children that have severe heart defects, like what? Then it did. How many of them seem to be successful with weaning from the feeding tube?

spk_3:   31:02
Children with you actually are one of our largest treatment groups. Many Children with organic Children, heart defects we treat by are the gala Medical service is on. Fortunately, they go very well, and the success rate in our Children is even higher than the overall success. Wait, So it's our really most successful treatment group. Yeah, I think the line it is, we have Children with 1/2 a plastic left socks in with tetralogy of follow, but also Children after a successful heart transplantation.

spk_0:   31:38
Really, you do work with transplant as well. And I'm sure that Children have had a transplant or maybe a little bit more complicated because they have so much more medication.

spk_3:   31:49
Yeah, that's true. So we were killed with the treatment team on site Doctor. Them is necessary on work together with them toe. Get the child the best possible help. Well,

spk_0:   32:03
this is a very impressive program. I'm so surprised that you are able to communicate with them on a daily basis. You must have a number of different clinicians to be able to work around the clock because, as we noticed, just trying to schedule this show. There's a seven hour time difference between Austria and Texas, and, you know, I mean hour time difference between California and Austria. So how many clinicians does no tube hire to work with the parents?

spk_3:   32:31
Actually, we have a three bed attrition to clinical psychologists, 1 50 of therapists and one music therapist. Yeah, and work on the tickets on a daily basis. But off course, the parents don't get an answer immediately. Sometimes it takes a few hours, but we're there for the parents. At least one daily. Mostly more often.

spk_0:   32:53
Did you say you have a music therapist as well?

spk_3:   32:57
Yeah. Yeah, we have. She's mainly working with our on site patients, but sometimes she even works with Children of your ticket system. So

spk_0:   33:07
you're really taking, ah, whole child approach. You're not looking at just beating it. Sounds to me like you're looking at the

spk_3:   33:14
whole child. Yeah, that's the most important thing in our work. We're looking at the whole child. They're not focusing only on the deficits child has, but on their ability. And it's the main principle of our program.

spk_0:   33:31
I like that every child has a really only on the deficit, but on their abilities. Yeah, I really well, by that principle, need a much more positive if you can focus on the ability to child has you can build on those. I mean, you have to acknowledge the deficits too, So you know what it is that you're trying to re mediate. So this sounds like it must be terribly expensive. What kind of costs are involved with.

spk_3:   34:01
Actually, that depends on which program you take. The ignition, the medical assessment. We do an assessment before we started a program to ensure that the child is suitable for a program and not to tell the parents were able to do it. But in fact, the child is medically unstable or something like that. So we do a very specialized medical assessment before, which caused the 240 years. And after that, that you preening program itself is 3400 year old, which is actually a fraction of the price of the treatment in the hospital. My go. Fortunately, many insurance companies all over the world already cover our treatment costs, mainly in Europe by now. But he already got chocolate in the U. S. So there is hope for us parents to get our treatment covered.

spk_0:   34:53
That's good to know, and my show is broadcast all over the world. So this compartment help for the families in Germany and even Australia and New Zealand, and I have people who are listening from all over the world, and it's nice to know that this is available for yeah, all of them and that cause is actually much less than what I would expect for 24 hours availability and for the success rate that you have. I know it's a lot of money, there's no doubt about it. But really, considering you're changing the child's ability to eat and to perform normally in the family, I think that that is a very reasonable cost, actually, and wow, it's amazing to me that they can get this assault approach for less than 4000 euros, so that really is reasonable. And it's good to know that the insurance company realizes that it's to the new hub benefit to get off of that feeding tube. I'm sure if there's costs involved in having a feeding tube and there's opportunities for infection, anytime you have something foreign in the body, there's opportunities for problems with that. So probably overall, it's in the insurance company's best interests. Also to help the Children to get off the feeding tube.

spk_3:   36:13
Yes, of course, it is mostly cost for feeding tube are Buck 3000 years ago. After two months off you feeding the costs are covered

spk_0:   36:25
my age and in a good way to look at it, too. Yes, so intelligent life

spk_3:   36:30
insurance coverage and we provide individual coverage letters for the insurances. And fortunately, we really got a great success in Germany, for example, about 90% of all operations got that whole cost covered. So

spk_0:   36:47
wow, that's awesome. Well, this gives me a lot of hope for our heart patients who are all over the world, who might need, you know, this kind of help, because I think it's really hard to do it on your own as much as you do your child. You need to help whether you go to a feeding clinic, whether you're going to the hospital or whether we use your company like yours. So what is the most important thing her parents of Children who require feeding tube in order to survive, to know What do you think they need to know?

spk_3:   37:18
I think it is very important for them. I didn't know that the medical team who blazed the cube is responsible for the tube and need to provide to management plan and also an exit strategy, because some sometimes dancer left alone that feeding tube is put into the child and then they are sent home and nobody cared. So it is very important that parents know that they really have the right toe, get as much information as they wanted as much support. But the medical team, and actually there are some Children who needed fuel for their whole life family. They have a TV, a metabolic heat or something. But in many, many cases que pinning its possible. And this is important to know, I think, flying appearance to put Children well,

spk_0:   38:12
that's a really good thing for them to know that there should be an exit strategy. I love that that not only are we going to provide this tube to help them gain, like you said, there are some Children that have to be on the tube. It's not throw that we would prefer our Children to survive. But if it gives them a chance for something bigger than any that, were it, right, Yeah, and so that the team should not only be taking care of the child on the tee, but should be looking for that exit strategy. I actually love that. That's really awesome. And you're right that not every team maybe is good at communicating about that So it's up to the parents to ask, What is your strategy? How long should we be on this tape? No, I'm an average amount of months being that Children normally are on the feeding tube before they're ready to be off of it.

spk_3:   39:05
No one can say that in general really depends on the underlying medical deceit chilly. But in many cases the parents ask medical professionals than to be in the child. And they say when the child is eating, which actually doesn't happen if you don't start being so right now, I'm necessarily long on a feeding Cuban. This is never easy.

spk_0:   39:29
Yeah, when I was doing my research for this show, one of the things that I found that was really interesting when they said that Children who are malnourished for extended periods of time don't feel hunger the way normal people do and that they don't really want to eat. Which is exactly what Christie shared with us earlier was that then it was just He had the oil of a version that he just was not interested in food and didn't want to eat. What kind of clues do our Children our babies give us. Let us know that they are ready to wean from defeating, too

spk_3:   40:03
generally a childhood in a medically stable condition, which means that there are no upcoming surgeries during the next weeks and there's no chemotherapy of that thing. And it's kids to eat or really from a medical point of view should actually be weaned because the longer you are on a feeding tube on the older Children get the more massive, too dependent secures. And whenever Children start to show interest in Orel activities, it must repeat that they start eating. But some housing, plastic doors, all that stuff one should think about lean.

spk_0:   40:41
Okay, so even if it's not food that they're putting in your mouth, if they knew a rabbit or something, some kind of toy and they start putting it in their mouth, that's a good sign.

spk_3:   40:53
That's a good sign because many Children who are stupid, always full because they stuffed with few pieces because a certain amount every two or three hours so they never feel hunger and they even feel sick all the time because they are just filled up. And so one cannot expect the Children toe develop hammer before bomb. Let's feel some hunger. So, Marie And every morning I tried not eating before the green. We have Children who don't even go into a room. That would be so. I really, really severe aversion.

spk_0:   41:33
Mmm. So that's why you were saying to you, though, that it's better to do it when they're younger, if they're medically stable, and if they are cleared to do it so that they don't continue to have that feeling of fullness. And Mikey, that almost to the point of being too full. And I imagine that you can't really take by mouth as much as you can when you're pumping it into the baby, you get tired of you.

spk_3:   41:59
Yeah, that's the problem. About 50% of our patients suffer from recurrent vomiting. So national, who vomit up to 50 times a day. So when can I expect them to eat sufficient amounts before the

spk_0:   42:12
Yeah, you wouldn't want to do if you're associating, vomiting with eating and that we are too. Yeah. So do you work with the Children to give them medication to prevent the vomiting? Or do you recommend that they consider having surgery? Like what? Then it had he had the missing funded education, and that prevents the vomiting. Do you have to take care of before you can do the feeding?

spk_3:   42:39
Actually, fortunately, in over 90% of all patients, the vomiting stopped completely. If the child gets read, so vomiting is often associated with very unnatural kind of feeding the dumping it we re feeding tube. And if Children started it all really, then to decide themselves what they want to eat until then, then the whole thing. So by itself, no plea

spk_0:   43:10
way, how so that she had another reason to go ahead and start them sooner so that they start normalizing their feeding, you know, because it really isn't normal to have that tube in the body. But we're so thankful that we do have that option so they can survive

spk_3:   43:26
on hold to go through the world. Absolutely life saving it twice. But it shouldn't stay longer than necessary, so that's all we want to find out.

spk_0:   43:37
So what advice would you give to parents of a child who are dependent on a feeding tube when they feel helpless to do anything about it?

spk_3:   43:46
Well, I strongly recommend, Christie said, to collect as much information as possible because many Children were considered it's unreasonable has been successfully bean and are sustaining themselves orally since many years. And we also have a Facebook group for parents or keep dependent Children. And it's called No. Two parents and professionals. Very sloppy exchange between parents and Children has been renamed and parents who were interested in meaning their Children. So I think it's very important toe get as much information as possible about the possibilities. Green Child and Hall ticket help.

spk_0:   44:28
You just said that there's this support group where the No. Two parents and professionals, once the child, is weaned. Is it ever possible that a child would be successfully weaned on Lee to have to go back on the two because they're not growing sufficiently?

spk_3:   44:44
Of course, there's always the possibility that this happens, but fortunately after our treatment, we do some long term checkup. In three or four years on there, not even 1% were to go back on the tube, and they want to have to go back on the tube. Captain really ill, So it's not preventable, but most Children, if they have learned to eat the never go back

spk_0:   45:11
that's wonderful under that gives you a lot of hope that okay, trouble through this process, and it's going to be a 3 to 6 weeks that you're struggling with this. But you have all of this wonderful support. And once we get this child off, the chances are highly likely that they'll never have to go back on that feeding tube so long as they stay healthy. You have a really amazing information, and less than 1% need to go back on a feeding tube. That would be my concern is what if we get the child off? But he can. He or she cannot consume enough to continue growing and especially like in the case of hep, a plastic lift. Our syndrome are tetralogy of fellow or some of the other, more complex heart defects where there are valve problems and you know your child is probably going to need additional surgery in the future. You don't want to have to go back, so it's good to know that if you can successfully wean them and get them eating normally, that there's great hope that they won't ever have to go back on the feeding tube. Thank you so much B for sharing such awesome information with us and really, really inspiring statistics. I love the fact that you were able to give us so many statistics and that you're focusing on the abilities that the child has been doing. Ah, whole child approach. It really does sound wonderful. I hope that other listeners that we have in our listening audience, I hope that they will feel free to contact you and I already have on my website the No tube you are l. So you can just go to the heart to heart with anna dot com Web site and look under bios. And under the BIOS, there's Beings, information and the Web site information for no tube. So now it's time for a commercial break. But don't go far. As soon as we're done with, this commercial will have a question and answer portion. And when we return Christy and B, we'll take any questions from our listeners regarding our own situation, dealing with congenital heart defects and to feeding. Find out what other parents need to know why it's so difficult to win some Children from their tubes when we come back to heart to heart with Anna

spk_4:   47:25
Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource is that information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the CHP community. Visit Heart to Heart with anna dot com today.

spk_0:   47:58
Welcome back to our show Heart to Heart with Anna, a show for the congenital heart defect community. Today we are talking with hurt mom Christy Saunders and being Persia, who is a clinical psychologist and feeding tube a specialist. We just charged with Christy about her experience of having a child was a congenital heart defect who needed to have a Nissen Fund implication and G to placed for feeding and how she was able to successfully wean Bennett from that feeding tube. And we also heard from clinical psychologist and feeding tube specialists being murder shit about the company that she works for no tube l l C. And how parents can successfully wean their Children from their feeding tube. So I'm going to put everybody in studio right now. This is always an exciting part of this show for me to have everybody together. And I wanted to thank you, Christy, and being for coming on heart to heart with Anna. This is such an important issue. When I was doing my research and I saw 40 to 60% of Children with congenital heart defects end up being malnourished, labeled failure to thrive, and so many of them end up needing feeding tubes. You know that this is a huge population and being even verified that to you by saying that the largest population they help our Children with congenital heart defects. So thank you. Thank you for coming on and helping other families who are listening today. We are empowering them to do what they need. Todo and Christy, I love the way you said it was my son. I needed to do this. I had to trust my gut, that a sentiment that comes through on a lot of issues on this show. There's so many times. Yeah, we find that it's the parents that have to trust their gut and just go for it sometimes. And Sabine, it sounds like almost all your life as an adult university. You have been involved in helping Children like Bennett.

spk_3:   49:54
Yes, of course, it's not only a chop, it kind off. Um, passion

spk_0:   50:02
it is. It sounds like it's a calling for you that you were drawn to this area, and you are helping people all over the world enhance their lives and giving these Children a chance to be normal because it doesn't feel normal when you have a feeding tube in you. And I'm sure there are all kinds of limitations on the way you can play and what you can do when you have a feeding tube attached to you.

spk_2:   50:27
Yeah, I just want to say I kind of got emotional listening, Sabine, because she was our therapist. And it's not just about the baby with Sabine or with any of the no see people. It's a whole family, and being really helped me as a mom be confident and to move forward and cheese. You could see it in here in the way he's talking about. It is amazing. And this company takes not just the whole child like you were saying that the whole family and helps us all move forward from this horrible thing that happened to us. So I think you should be. Now that I have you on the line, we just love you so much.

spk_3:   51:02
Thank you. Thank you so much for trusting. Well, of course, I

spk_0:   51:12
love that you all have the special relationship. We have that with our speech therapists and occupational therapists physical. There is all of these people who help us to regain a sense of normalcy with our Children. You have become part of our family. Have they have seen you're

spk_3:   51:32
part of a lot of people family all

spk_2:   51:38
over the world?

spk_0:   51:39
Off one listener who wrote in Who said that her son was a great eater before his second surgery. But now that he had a second surgery, he had vocal cord damage and he won't eat. He doesn't want the bottle, even though he gets excited when he sees it. He won't take it, and he failed to swallow study for thin liquids. Now he has an n G tube and the mom is wondering, How long is it gonna take for him before he gets better? So, Sabine, have you dealt with situations like this? And can you give this mother some advice?

spk_3:   52:16
Well, yes, of course. It really sounds like a post traumatic eating problem after the problem with the local court. So if the child is acute toe swallow any kind of food, if it's not liquid. So maybe it's the same ing fluids O. R. Pruitt, food and all that stuff reading should, of course, people from as soon as possible. So I will not wait too long until you reach for professional advice on how to help the child. Because as long as the tube is in here, the hole are the Russian gets more so off course, one should recharge professional at life into a creamy. Okay,

spk_0:   53:03
So it sounds encouraging, though, that if a baby is a good eater before the surgery that they should hopefully not have to be on the tube for very long. Is that right? Yeah, of

spk_3:   53:13
course. Maybe the broken souls by itself. But if it thousands, one really should get professional help. And it's not surprising that the child got some moral aversion of studies, very traumatizing experience. And they are Rick. Um, so

spk_0:   53:31
so is it common for you to work with Children who have had vocal cord the image as well as heart defects? Yeah,

spk_3:   53:42
we have quite a lot of Children with the vocal cord damage, and the most important thing before weaning is to know if they are able to swallow on. They're not aspirating. But if this issue is so, one can get along with the reading, if a lot of medical issues are stable

spk_0:   54:01
being, can you walk us through what the best process is? You said they need to get help from medical professionals. But I know there are a lot of parents who say, Where do I start with the best person for them to contact?

spk_3:   54:14
Well, actually, there are some feeding therapists all over developed for the millions from feeding clinics. And, of course, you can always come picked up at the board via our email address. Are the phone or Skype. All contact details on our home page and you will get back to you need it most in 24 hours toe tell you which way we think it's the best for you and your child to proceed.

spk_0:   54:40
Okay, well, that's perfect. That's exactly the information that people need to know. If you are in a major city like Atlanta or Boston or San Diego differences, a lot of those big cities will have feeding clinics. I know Atlanta has big women, is very well known, and so that is a good place for you to start. Of course, if you have a computer, then you can go ahead and go online. Check out hard, Too hard up, Anna. Look under the bio section for the Gastro Intestinal show, and then you can see the direct link. You can click right on that, and it will take you to the no tube site. And there you can read and they do have email so you can email them and obviously they speak English, even other in Austria, very well able to communicate with Americans. Do you have clinicians that speak other languages as well? I know in Austria comment to speak German and probably French and some other languages. Yeah,

spk_3:   55:39
we offer treatment in terminal English, but he also happen a French interpreter. So French speaking patients get a whole support on dhe Wanna for conditions, although speaks Italian, and we also had patients who speak Hebrew. So it's the language should not be the problem.

spk_0:   55:58
Good. So it's a very global community, a very your national organization. Thank you, Christy, and being believe it or not, we are out of time already have been a great show, and I really do believe we've had a chance to empower some parents with all of this information. I want to welcome all of my listeners to check out our website www dot heart to heart with anna dot com. Until this, please find it like us on Facebook. Check out our website heart to heart with anna dot com. And remember, my friends, there is hope.

spk_1:   56:35
Thank you again for joining us this week. We hope you've been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart with Anna, with your host, Anna Gorsky can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week