Breastfeeding your CHD Baby (Remastered)

Breastfeeding a baby with a congenital heart defect has unique and special challenges. Many babies with critical congenital heart defects are taken away from the mother before having a chance to nurse at all. These babies also frequently have open-heart surgery within the first days or weeks of life and are often intubated and paralyzed which can interfere with the baby's natural sucking reflex. How can mothers breastfeed these medically fragile children? What myths surround breastfeeding a baby with a congenital heart defect? What are the benefits of breastfeeding and what can mothers do if their babies are too weak to nurse? We'll discuss these topics and more with two heart moms who have breastfed their babies and a nurse who is a breastfeeding specialist. This program has been remastered and originally aired in Season 2 of Heart to Heart with Anna.

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Transcript

spk_0:   0:02
Welcome to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH to York and genital 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 an edge or ski

spk_2:   0:31
welcome

spk_1:   0:31
to the ninth episode of the second season of Heart 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. According to the World Health Organization, breastfeeding is one of the most effective ways to ensure child health and survival. If every child was breast fed within an hour of birth, given only breast milk for their 1st 6 months of life and continued breast feeding up to the age of two years, about 800,000 child lives would be saved every year. Globally, less than 40% of infants under six months of age are exclusively breast fit, adequate breastfeeding, counseling and support, or essential for mothers and families to initiate and maintain optimal breast feeding practices. The American Academy of Pediatrics states. Breast feeding is a natural and beneficial source of nutrition and provides the healthiest start for an infant. In addition to the nutritional benefits, breastfeeding promotes a unique and emotional connection between mother and baby in the policy statement. Breastfeeding and the use of Human Milk Publishing in March 2012. Issue of Pediatrics. The American Academy of Pediatrics firms its recommendation of exclusive breastfeeding for about the 1st 6 months of the baby's life, followed by breastfeeding in combination with the introduction of complimentary food until these 12 months of age and continuation of breast feeding for as long as mutually desired by mother and baby. This recommendation is supported by the health outcomes of exclusively breast fed incense and infant who never or only partially breast fit breastfeeding provides a protective effect against respiratory elements. Is your infections, gastrointestinal diseases and allergies, including asthma, eczema and atopic dermatitis. The rate of sudden infant death syndrome, or SIDS, is reduced by over 1/3 and breast fed babies, and there was a 15% to 30% reduction in adolescent and adult obesity in breast fed versus non breast fed infants. Approximately 75% of newborn infants initiate breastfeeding hospital routines. More and more attempt to accommodate the breastfeeding Mother Pediatricians promote the advantages of breastfeeding two mothers and infants, as well as the health risks of not breastfeeding. As such, choosing to breastfeed should be considered an investment in the short and long term health of the infant rather than a lifestyle choice. Clearly, these two respected organizations see the value of breastfeeding. However, it is not uncommon when a mother is told her child has a congenital heart defect for all hope of breastfeeding to be lost. It seems to me that if any babies really need to be breast fit its babies with congenital heart defects because of the health benefits, it seems like a no brainer that hard moms should breastfeed their babies. Unfortunately, there are a number of myths surrounding breastfeeding. A baby with a congenital heart defect er ch d. Today we will talk with two heart mothers who successfully present their babies about their experiences. We will also talk with a nurse who specializes in helping mothers to breast feed their babies, our guest today or heart Mom, Amelia Willis and Lauren Watson and nurse and breastfeeding specialist Marie Being Couso. Amelia Willis is a full time mom to her two year old son, Jensen. He was prenatally diagnosed with hypoplastic left heart syndrome, or H L H. Before his birth, a 1,000,000 family temporarily relocated from North Carolina to the Philadelphia area so he could undergo his palliative surgeries. At the Children's Hospital of Philadelphia, Jensen had a very complicated stage one surgery, also known as the Norwood procedure that required multiple surgical revisions and handed up on extracorporeal membrane, oxygen or ECMO. Jensen also suffered a paralyzed vocal cord, which left him unable to breastfeed and left Emilia heartbroken. After many months of pumping, fortifying and learning how to nurse, they finally managed to have a successful breastfeeding experience. Jensen was able to nurse like any other baby for an entire year. Encouraging other moms about breastfeeding has become Amelia's passion. Why they're someone else's child is healthy or not, She believes everyone can use support. Welcome to heart, to heart with that familiar Thank you

spk_4:   5:01
for having me. It's great to be here.

spk_1:   5:03
It seems like you had a really rough time nursing Jensen in the beginning, the doctors tried to discourage you from pumping and using breast milk. Or was your whole medical team behind your decision to eventually breastfeed Jensen?

spk_4:   5:17
I was actually surprised by the amount of support we received from a medical team. My husband and I made it very clear from the beginning that I wanted to nurse, and until Dimson was given the green light to do so, we wanted to give him some breast milk. And so everyone from the labor and delivery nurses to the cardiac I. C U, his surgeon, who's attending the therapist. Everyone was so willing to accommodate us and gives us some breast milk. There was even a time when doesn't like a lot of other heart babies that I know needed to gain weight? And so his team has suggested fortifying his breast milk or formula. They told the nurses that I really wanted to China and avoid formula if we could, so they spent a lot of time with me sitting down, showing me how to separate out breast milk to give him extra calories. Who this seems like everyone we dealt with was genuinely respectful of our decision, and that took so much stress off of me and made it easy for me to keep up the milk supply and because my goal

spk_1:   6:15
Wow, that's so awesome. You were the first mom that I have spoken to who have had that much support with regards to her decision to breastfeed her baby. That is dependent. I wonder if that's just something special about Children's Hospital of Philadelphia or not. Maybe. Hopefully, people are starting to recognize how important it is for our Children to have breast milk and to encourage the mom. Because one of the things that I saw the mom in the hospital was that so many moms would get so stressed out about their baby being in surgery or their baby having complications, which it seems like they all do that they felt they were unable. They felt they couldn't pump, or when they went to pump, they weren't getting very much out, and they were discouraged and stressed out. So it sounds like with all the support you were getting, maybe that wasn't us. Much of a problem for you,

spk_4:   7:08
right? I mean, it's so struck being in the hospital, on having a baby so critically ill, it's stressful for any mom, especially along. That's trying to keep up a milk supply for her baby and that his address of feeling like you don't have to court that can really dwindle your milk supply. And so, actually, I ended up with an oversupply of It was an oversupply of love and support from our family and friends and a support staff. Everyone is great. So we ended up with too much milk, actually, from all the support

spk_2:   7:37
Oh my gosh,

spk_1:   7:38
what a great problem toe have. But then when he finally was able to nurse successfully because it sounds like he went through quite an ordeal before he was able to finally nurse with you, he had

spk_4:   7:50
a very rough start. And so he was five months old when he successfully nurse for the first time. He was one month post Glen, but so just before the surgery, we had seen him off of this feeding tube. He had passed the Swallow study and have been taking bottles by mouth very well. But I felt like he was in a good place and that we were ready to try nursing. So we were at our home pediatrician in North Carolina, and we met with their left teaching consultant. But he happened to be very experience for premature babies who have a lot of the same issues as our congenital heart defect babies because he was very understanding of all that. We had been through something on my boat if you work with us on positioning and lattes and had a lot of great advice. So right there in her office, the first appointment on the parrot gun inserted mercy, and I was completely shocked that he caught on so fast. I cried tears of relief after months and months of convenience and dress.

spk_1:   8:46
Yeah, yeah, that's so awesome. Now, how long was he able to nurse that first time? And he's

spk_4:   8:53
about 20 to 30 minutes, which was incredible for a baby. That one month post op and he was just here have been through so much so 20 to 30 minutes, like they typically recommend. I think I was very impressed. He used a strong willed little boy.

spk_1:   9:09
He is. I'm impressed, Thio, and I'm a president. You that she hasn't had to go through weaning him from a feeding to first and going to a passing the swallow testing all that. I mean, you had a lot of hoops to jump through before you could do something that much. That's the thing Is that people who have Children who are heart healthy they don't even give it a second thought,

spk_4:   9:30
right? Yeah. So that's what I'm hoping that we can get the word out like it can be done. I approve and I will tell anyone that cares. So listen, it can be done. It's it's hard work, but it can be done.

spk_1:   9:42
Well, it seems like you had a whole team of people helping you from the speech pathologist to the nurses to like patient Good Sultan. How important do you think it is to have a team approach like that?

spk_4:   9:56
I think that was absolutely vital to our success because we had people with all different types of experience. His nutritionist. He had one perspective, and his lactation consultant had other areas. That she was very experienced bin and then his doctors even had included some of them, you know, not as much as you would expect from the lactation consultant, but they were all willing to give advice and think of new ideas. It was vitally important tohave this a team approach to are breastfeeding, really since up?

spk_1:   10:27
Yeah, I think that is just wonderful that you had an entire team, everybody was on board. You all had the same goal. That makes a huge difference because I think you're setting yourself up for success.

spk_4:   10:38
Definitely. And of course, other than our medical team, I had a great support system and my family. My husband was a huge cheerleader for us and he was always reminding me of why I wanted to keep going because I felt like quitting a lot and he would remind me of my end goal was to just nurse my baby. And so he was. That's a great help, and I could not have done it without him. Definitely.

spk_1:   11:00
Now that's such a sweet story. I love that. That's wonderful. It's so nice when you have family members who come to your aid at that time because were sleep deprived. We've just given birth to my baby, critically ill sleep deprived. We're not in our normal homes were in hospital settings, and it's very easy to get depressed and feel overwhelmed. The heavy nets support from your husband and your other family members. Wow, that really does make a huge difference. So what was the most frustrating part about not being able to nurse Jensen for five months?

spk_4:   11:34
I would say the most frustrating part was just feeling helpless. I felt like I wasn't taking care of my own baby. I feel like holding your baby clothes and feeding him as a newborn is such a basic part of motherhood. And I just felt like I was missing out. I wanted nothing more than just scooped him up out of his hospital bed and hold him and hear him. But there was times that he was too critical, but we couldn't hold him. Of course, he was too sick for that. And so we had all these other people around him, nurses and respiratory therapist that were doing all these things to help him recover from these major surgeries That felt like I had nothing to do or that I was missing out on the crucial bonding moments when their newborn

spk_1:   12:13
I hear you. When Alex was in the hospital, I I was so frustrated because I wasn't a nurse. I didn't know how to care for him. The way I had been caring for him before. He had a surgery and I felt that the only thing that I could do that only I could do and none of these nurses or doctors or technicians could use with pump milk for Alex. All right, I was just about going and pumping the milk and storing it, and I was so stressed that sometimes it felt like I wasn't getting much of anything, but it didn't matter. I kept going and I would focus on what he looked like, what he smelled like and just close my eyes. And sometimes I cried because he was in a bad spot. But a lot of times, just by envisioning him and thinking about what he smelled like, I was able to go ahead and produce some milk, but right really hard. A mom feels like her major job is to take care of her baby, and when they're in the hospital like that, we're limited on the amount of care that we can contribute. So I commend you for doing the pumping. It's a point where you had a gosh. I think that's amazing, thank you know that we had extra

spk_4:   13:23
We were very lucky, and I won't use oversupply.

spk_1:   13:27
And you

spk_4:   13:28
were so blessed.

spk_1:   13:30
Yeah. Did you donate your milk?

spk_4:   13:32
I was actually unable to donate. Actually. Funny enough, because I take allergy medicine every day. And so that disqualified me from donating. I was really disappointed that I said I did. There's someone a family member so act and other babies in the family on. We shared breast milk, so it worked out.

spk_1:   13:50
Yeah, but that's great, Amelia. Best advice do you have for someone wanting to nurse her baby who has a critical Can you have a heart defect like a jewel? A check if she's going to be separated from her baby while the baby is recovering from that open heart surgery that they need,

spk_4:   14:05
I would say the biggest thing that made the difference for me was to stay determined, having that support system around me to remind me that this is your goal. This is what you want to do. And they helped me. I had to remind myself of my ankles. I had kind of does research. Simpson was prenatally diagnosed, so I have done some research and realized not many babies with these defects are breasts, so I knew that it would be a rocky road, but I was determined to try. I wanted to participate in Johnson's success, so I talked with lactation consultants and Erica's, and they gave me things to do that could make me part of Justin's recovery. Doing skin the skin may be wearing a dipping his pacifier in breast milk. This lots of things that I could do as his mom to make me feel like I was part of his recovery.

spk_1:   14:53
Oh, wow, I love that. Tell me a little bit more about the skin to skin.

spk_4:   14:58
Once Johnson was to a point where he was stable enough that I could hold him generally, once he was off of the ventilator, the breathing tube. We could take him up and hold him, and I would hold him against my chest and he had no clothes on. And so we had direct skin to skin contact. So it was just time for us to bond to spend time together for him to tell me. I think for me the small hands that really helped my milk supply. I think that was invaluable time that we spent together that really helped me to feel more connected to him and to be even more determined to nurse this baby has felt determination like no other after you in the skin.

spk_1:   15:36
Wow, I haven't heard of anybody doing that before, but it is something that other heart moms and I have talked about that we wish they would do the minute the baby was born. Because when they match your baby away and take him to the I C. U. And you don't have any of that skin to skin time, it feels like a loss. And you know what? I was hoping that that would be something that we could advocate for, and that is immediately after the birth of the baby is not in distress. Give them a few minutes of skin to skin time before you have to take them away. I know they have to be taken away for a lot of different tests and everything, and you don't want the baby to crash course while their skin to skin with you. But I just think there's writing about them smelling you and you smelling them. Like you said. I think it helps the milk supply And that's how we do the bonding. That's where it all started. Yard. So I love it that they did that with you. That's wonderful. And then dipping to pass a fire in your breast milk. I hadn't heard that before, So when were you got

spk_4:   16:36
fire? He was discharged. So he was still working on feeding. And we have determined that he had the paralyze vocal cords. So we knew that he wasn't gonna be able to swallow liquid breast milk just by itself. So we would just do literally one drop of breast milk on a pacifier. And I felt like if he can only have one drop than it should be a drop of breast milk just to get, you know, the taste this toe work on his second leg, we would also do cotton flubs and dip it in costume and swap that around his mouth. That was when he was still intubated. Just anything that we could do to stimulate the suck reflex or to get that breast milk in him.

spk_1:   17:14
That's all awesome advice. I love everything that you said. That all sounds and I can see why you really were able to have a successful experience. You did all the right things and then some. I'm really impressed. Thank you. And I'm so glad you're out there being an advocate. I mean, you obviously have a lot of information that you can share with others and really help people. I know a lot of people are afraid that when their baby has to have a feeding tube, that there goes their chance. Thio ever nurse their baby. But Jensen's evidence that that doesn't have to be the case

spk_4:   17:49
right? And it was not easy to wean him off of the tube. And then we'll wean him off of the bottle. But it took work. And even once he started nursing, we still had issues. We could only nurse him in certain positions because he had sensory issues. Where were so great that I couldn't hold in a certain way? So it's not easy. But once we got it down and figured out what worked for Jensen and I, it was so easy. And it was so so worth it. Totally worth all this with the pain that we have gone through. Well,

spk_1:   18:17
thank you so much for sharing your experience, Amelia. I'm just so inspired by everything that you shared. I really am.

spk_4:   18:25
Thank you. Thank you for having me and letting me share my story.

spk_1:   18:29
Well, it was my pleasure. And now I get a chance to talk with Warren Watson. Lauren Watson is a wife. She's a part time small business owner and a full time mother to two Children. Jackson, who is on the six, and Addison, who will be two. In November. Addison was diagnosed in Euro. Would track husband atresia have a plastic right heart syndrome of ESPN ASD and transposition of the Great Arteries mooring breast fed Addison before and after two heart surgeries, both of which involved complications and questions about Addison survival. Lauren is a native Texan who grew up in the Dallas area but who now lives in rural East Texas on wooded land with a creek. She received a bachelor's degree in elementary education from Stephen, a Boston University in Nacogdoches, Texas, in 2004. In her brief moments of spare time, she enjoys sewing, cooking, watching movies, online advocacy for CHD, participating in the political process and playing outdoors with her family gelato, homeschooled Jackson and help her has been managed their outdoor planting or three. Welcome to Heart Heart with Anna Lorne.

spk_3:   19:34
I think you know for having me, but

spk_1:   19:37
I'm so happy to be talking to you. You and I have so much in common because I nursed my sons, and I also homeschooled my sense. Oh,

spk_3:   19:45
I did not

spk_2:   19:46
know that. That's really also yes. Well, you

spk_1:   19:50
mentioned in your bio that you were able to breast feed Addison before and after her heart surgeries, and that seems to be fairly uncommon with many Children who have complex, congenital heart defects like she does. She has both Hypo Plastic right Heart syndrome and transposition of the great vessels. Those air too complex, congenital heart defects. How soon did she have her first surgery? And can you tell me a little bit about your opportunity to start nursing with Addison? Yes, she was

spk_3:   20:20
born at the women's civilian at Texas Children's Hospital in Houston, and so it was really neat is after

spk_1:   20:26
she was born. She

spk_3:   20:27
was taken immediately away, even though she was born pink, and she looks great and she could have started nursing at that point, but they still wanted to take her away to Nick you. So we were separated at first and I was able to start pumping. But it was great. We were still in the same hospital. I could go visit her. But every time I tried to breast feed her, they would give me opportunities. I would get there and they had just given her a bottle. So I was able to hold her and get that bonding time. We did do kangaroo care. That's what they call this interest in contact in Houston. And so I immediately, two hours after surgery, started pumping and did that for every two hours. At the beginning, it was blowing. It was going really great. And then after about 12 hours, just everything stopped and I had to keep pumping through, like, 24 hours of nothing. What was really need is, in the end, my milk did come in. I did not get to be with her until four days after they finally released her. She did not need her first surgery until she was around three months old.

spk_1:   21:31
Oh, wow. So it sounds like maybe Addison a little bit like my son Alex. Alex also had transposition of the great vessels. Get hypoplastic left heart syndrome, and he also had a VSD. And what my doctors told us was that he had so many defects that some of them actually compensated for each other. Is that the same case with Addison

spk_3:   21:53
that is a painting for her? Like her, VSD is actually helpful in her detective with her heart. It helped her, but before her purse surgery, she was in heart failure. So her breast feeding was going great. Like we're really breastfeeding. Well, that her weight gain was slow simply because she was in heart failure. And so we continued breast feeding up until surgery. And that's when everything kind of went not as planned for Addison because she did not respond well to surgery and she had her crash. He coded in her heart. Rate plummeted or blood pressure did, and they had to do chest compressions. And that was the hardest time I found to pump because you are so stressed out. You don't know if your baby is going to survive, But it's weird because at the same time it gave me something to do. I had a purpose, and I had something to do when I couldn't help her. I could help her at least give her what she wanted when she recovered. Like she loved to breastfeed. He really loved being with her mama and having that contact.

spk_1:   22:51
Oh, and I'm sure you loved it. I mean, for me, having Alex there and me being able to do that. One thing that nobody else could do for him meant so much to me because I didn't feel so helpless, just like what Amelia was saying earlier. I think the worst part for me two was that I was separated from my son and I wasn't able to care for him. And I had a healthy child before I had Alexander, just like you had a healthy child to you. You had Jackson that we know what it's like to be the mom of a healthy child, and I kind of felt like I had something stolen away from me when Alex had to go in the hospital. Did you feel like that, too? I

spk_3:   23:31
felt frustrated because I knew that she could breast feed, but they were doing the testing and all that. But I understood. And I think what help is that? I came prepared I was ready. I had breast fed Jackson before, so I was ready to pump. I love the hospital grade pumps. I give you it. Texas Children's Hospital, Houston. They gave me all the supplies that I needed. The milk bank where you send your milk. It was just wonderful. We were able to give Addison donor milk in the keys. She just didn't tolerate formula. And so that was a real blessing to have that available for Addison and then available throughout. But she didn't need it. I mean, men don't came in and we did good. But one thing that during those dreadful moment, sometimes I would only get happen out. So I would have to really train my mind focused. And during that time on the positive that it doesn't matter if I just got half announced. At least I got something. And that's advice delectation consultant gave me to not look at how much you're pumping out. But just be glad that you made something, and that really helped me get through all of that time. And that was sometimes this time me and my husband went, I would pump and he would come with me just to encourage me. It was a really good time for us to just regroup and get stronger. Before we went back and visitor on TV, I used.

spk_1:   24:46
That's wonderful. Yeah, I agree with you. My mom was the one who came with me and helped me through that process, and you do need to just focus on the positive. But you're right. Sometimes, even when you're focusing on the positive, your body doesn't produce as much milk as you want it to. And I think you're right that being consistent and keeping with the program anyway, No matter how much you put out that, that's the way that your milk will come in fully and eventually everything will work out. And I think it's a lot different when you're using a machine than when your baby is skin to skin with you. Don't you think so?

spk_3:   25:18
It was a total difference because I knew when she was with me that I was making what I needed, and I felt like, really God help me through that time that he helped us through all this time, so it's very stressful, but I felt his piece in his presence during that time because I know I should not have been ableto produce milk. I was stressed out and sad, but he carried us through that whole fucking sand. And when I got to be back with her, I know everything just came back. And your first surgery, they would not let me breastfeed her awhile after her surgery, they wanted to measure everything but my time. Her second surgery came around. Technicolor Hospital is a great hospital. They were very encouraging about breast feeding. But after the second hospital, they had that history and about Addison. They known that from strictly breast feeding. She had done so well. So they let her breast feed in the TV as you when she had arterial line. And that was in extremely nursing her. With all those lines built will the background story that is before her Glen. During pre op bloods, all she went into cardiac arrest just from the blood draw from crying too much. No, I think that that's why in TV I see you, they let her nurse because I just didn't want to take her off. And she really loves you. And so they know that my little seven redheaded baby girl, and you better give her what she wants there still freak out

spk_1:   26:36
on here. Wow. Well, good for her. I think. I think a lot of our heart kids have that stubborn streak, and that's what gets him through. So it's one of those double edged swords. On the one hand, you're so thankful that they're stubborn enough to fight for their life and make it. And on the other hand, when you're 23 years old in the suburbs, really learned the word no very well. What you think is the most important element in successfully nursing years. PhD baby, it sounds like you had so much right going for you. But what was the most important element for me? It

spk_3:   27:11
was maintaining milk supply during the times when she was in I C. U. And so I think the best way to do that is have a positive mindset for me. It was my Christian faith that got me through because the bottle verse that kept coming in my mind was, consider it pure joy when you face trials, because those tests your face and give you perseverance. And I found that through those moments where she had two surgeries. That was in 2017. I had my face really tested and I had to persevere. But I had to have a positive attitude and look at the positive side of things, and I think that really helped with my note supply because I wasn't able to nurse her. I went straight from her breast feeding all the time to nothing, just going toe pumps where it's cold and it's not fun. But I tried to make that time fun, like I watched movies and I talked to my husband or talk to my mom or my grandmother. They all came in there with me to help me and help me wash my stuff, the pump supplies and we made the best out of a bad situation. It did Billa, Perseverance.

spk_1:   28:11
My eight. I love that, the positive attitude and all of that support. I think it does help to set you up for a good outcome. Even if it's not a perfect outcome, it's a much better outcome than if you just well apart, like you refused to just fall apart. I'm proud of you for that. That's awesome. So now Addison is 20 month old, is that right? Yes, ma'am. And I thought, My goodness, she's 30 20 months old. Are you still nursing her now? Yes, he

spk_3:   28:42
is still nursing. She's a thriving toddler. She is just a bundle of joy. She is running, doing all the things we worried after her second code before her. Glenn, that was in June. Details. And 13. We worried that she could have neurological damage. She had ox that in the twenties and thirties for hours. And so it was very comforting after that second surgery, when she did nurse like Whoa, she's doing it! We were really hoping our girl would be the same girl that we brought in. And since her Glen the Glen really helped her, she went from the first percentile to the 60th percentile. And we have just been very amazed by her growth.

spk_2:   29:23
Oh! Oh, my goodness.

spk_1:   29:25
Yeah, she needed her, Glenn. I hadn't planned on asking you that. I'm going to ask you anyway. So when is she scheduled for her? Fontane? People have

spk_3:   29:33
a Fontane when she is a three, and I'm hoping she will wean before then. She is showing no interest in no cleaning at all. But they wanted to have her Fontane it three. Or when she was around £35.

spk_1:   29:47
Okay, what advice would you give to pediatric radiologist or cardiothoracic surgeons when they're working with a mom who wants to breast feed her baby to me

spk_3:   29:59
is the baby prefers breast feeding like Addie, then let them breast feed. During the time when Addie was waiting on her first surgery and was in heart failure. And she was having very slow growth and me going to fortified breast milk versus breast milk. We were not really gonna have any different outcome because she was in heart failure. So it didn't matter what she was thinking in. She just wasn't gonna gain as well. But her cardiologists didn't make her go. She had been on the breast for a month and 1/2 and made her go strictly the bottle. And she said, No, we're gonna be fortified. Breast milk, and that's it. No breastfeeding at all. And so we went home, and it was over Christmas. And by the sixth feed, it was Christmas Eve. Exactly six. She was decreasing rapidly. What she would take from a bottle that we finally have the parents had to make the decision to give her the breast again. And she was so much happier. And she was eating. And we went to her next cardiology appointment and she had gained. And at that point, the cardiologists like great fortified breast milk working. We looked at it and were like, We confess back. No, she's just a little time. But it was over Christmas and we couldn't call you. And she did, Well, breastfeeding shoes. Just a breastfeeding girl. She loves it.

spk_1:   31:11
That is so awesome. I love this, Lauren, because you trusted your gut as a mom and you made the executive decision that she's not doing well with this bottle. But I think she can do okay with the breast. And you made that decision and look, she's just done beautifully since then. And I'm glad that you told the doctors because I think it's more Mom had the same kind of experience and trusted their guts and then the baby did you? Well, maybe more cardiologists would be open to letting him exclusively breast feed instead of doing the fortified breast milk.

spk_3:   31:45
Yes, I think so. And they do have a test now where they can test your breast milk. That was one thing I found in Texas Children's Hospital, and I never had to go to that point. But they do have a way to actually test in how many calories you're when you make your welcome to give a sample. But I

spk_1:   32:02
don't know if necessary. She was gaining weight. That's all that nearly right. I didn't tell you anything better. Well, thank you so much, Lauren, for coming on the show and sharing with us. Unfortunately, I have to take a quick commercial break. But don't leave because coming up we have a nurse who specializes in helping women with breast feeding. We're going to debunk some myths about nursing a baby with a congenital heart defect and get to the truth when we return to the heart to heart with Anna.

spk_5:   32:34
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 our website 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_1:   33:11
Back to our show. Heart to Heart With Anna A show for the congenital heart defect community Today we're talking with Heart Mom Familiar Willis and Lauren Watson and nurse and breastfeeding specialist Caribbean contro. We just finished talking with Amelia and Lauren about their breastfeeding experiences with nursing their babies with congenital heart defects. Now we will turn our attention to Marie being cooped up. Caribbean Cruise Oh started helping mothers, babies and families to succeed at breastfeeding more than 30 years ago. Fondly remembered for decades by mothers, she earned their trust by helping them to country the misinformation but the myth and believe in themselves. Among her peers, Marie has received international recognition is a clinical expert look offer a national level change agent. She was a founding member of the United States Breastfeeding Committee, the past president of baby friendly U. S. A. And the founding editor of Nursing for women's health. Marie has both depth and breadth of experience, from having worked in community and teaching hospitals with mothers and health care providers in nearly all subspecialties of maternal infant health. From the mother's hospital bedside to the university classroom, Marie has honed her skills as helping people be good consumers of health care information. A native of the Rochester, New York, area, Marie now resides in the Washington, DC, area. But Criss crosses the country as director of Breastfeeding Outlook, the education company she founded in 1998. Through her courses and seminars, Marie works to help nurses and other professionals learned how to help families with breast feeding and related perinatal topics. Recognized for her warrants and personable teaching style, Marie continues to provide direct assistance to mothers as well. Marie writes weekly for her Blawg Marie's Outlook. Maria is also the host of Born to Be Breast Fed On Voice America. You can see the link to her radio show on my website, www dot heart to heart with anna dot com in the BIOS section, Welcome to heart Hurt with Ana Marie

spk_2:   35:13
and thank you so much for asking me. I'm really pleased to be able to join you as well as your guests to say I was very interested in their stories. I'm

spk_1:   35:22
delighted to be talking with you. And this is the second time for us to be on the radio together. And I think we're gonna have a great time busting some mixed together. One of those myths is that CHD baby should not be breast fed because so many of them are failure to thrive, baby. And some people feel there aren't enough calories in breast No, to help PhD babies grow. So can you debunk that myth for us, Murray?

spk_2:   35:48
Oh, sure. Interestingly, the Biddy does not necessarily need to be a ch d baby. But there are people who truly believe that this somehow not enough calories in human milk or they believe that formula has more calories. And actually the opposite is probably true. Now they're being sub. Let me be quick to explain that mothers make milk that has a different caloric value from morning to evening. It is, for example, less caloric in the morning, more caloric at night because of the greater about a fat. It varies from breast to breast, from mother to mother from day to day, et cetera, et cetera. But the average a mother will produce milk that is more or less in the 20 calories per ounce neighborhood and formula. Up until recently, he has been 20 calories per ounce there now, taking it down to 19 calories and outs on some brands. Death a story for another day. But anyway, where I want to go with that is to say, there is nothing deficient about the number of calories that is in human milk. And one of the guests I think it was. Lauren mentioned that now we can test mother's milk, and that's absolutely true if you look at those tests. But they basically do. Is they been it down? If anybody knows how to spin down, Ahem adequate, which is what I used to do is a young nurse. We used to just spin it down in our little lab. Now they send it down to the mainland. But it's the same idea, and what actually they find is that mother's milk can be as much as like 28 calorie in and out, so that the formula is stagnant and that will not be the case with human milk. The mother may very well have a very rich milk, and I would also just like to address what both of your guests talked about when they said fortifying milk. I would caution mothers to make very sure that they understand exactly what that means. Now I'm sure I'm showing my age here in us, but really fortifying milk is with technically. Technically, it means using milk fortified here and milk. Fortify your really does add extra calories, extra phosphorus and calcium and other minerals and so forth. But for me, love, I wouldn't really call that a true fortification, although I know that the health care professionals do use that term. But I think it's kind of confusing because then it be speaks the idea that somehow that formula is more caloric, and that's just not the truth. How

spk_1:   38:28
interesting, Because I really did think that formula must have more calories and must have know of something else that we don't produce by our bodies. But

spk_2:   38:37
one of

spk_1:   38:37
the things that I was told by a lactation consultant was that mother's bodies adapt to their babies. Absolutely. I wonder if sometimes we produce more caloric breast milk if our body senses that our baby needs it well,

spk_2:   38:54
I don't think we have any data on that. But what I can tell you is most of the calories in the milk come from the fat right. I usually explain it as it's like eating a French fry when you eat the French fry. And by the way, just f Y I to French fries equals 17 calories. All right. Most of those calories are from the oil and the that in the French fry, not the potato. And the same is the truth with human milk. Most of your calories they're going to come from the fatty part of the milk and, for example, the fat is higher in the evening is going to give you a more tolerant milk in the evening. And by the way, I have very midst feelings about testing mother's milk for calorie count. Because if it comes out and it's really high, the mother is really that elated. And if it comes out and it's not as high is yesterday, she's really bummed out. And they had kind of just close her self confidence. Yeah,

spk_1:   39:48
I'm right, right? Well, another myth that there is is that it's important to know exactly how many ounces of breast milk a baby is taking in, and a person can't do that if they're nursing. So what do you think about that math Marie?

spk_2:   40:05
It certainly is a myth. I would absolutely agree. It is a myth that it's well worth addressing. But, you know, actually, nowadays we can measure very precisely how much milk the baby is getting, and that's whether the baby has CHD or not. But let's back up for a moment. The real question here is whether the baby is actually taking the milk. Because I'm gonna tell you if the beauty start taking the melt, then you're not gonna have the ounces so many times. People that I'm talking, either parents or professionals really don't know how to determine if the baby's getting anything at all. All right, and what happens is what they look at is how many minutes the baby has been on the breast. As far as I'm concerned, that information is that real useful. What's really useful is learning that first of all, the mother actually does have a left out, which, if she's in an environment, you know, it used to be not so much so nowadays, but it used to be Nick. You were very noisy, very stressed bank laying off flack of residents walking through all of that so the mother might have a difficult time getting a left out. But the other thing is, you've got to listen for the baby swallowing. I don't care if the baby is at the breast two minutes or 20 minutes or 20 days. If you're not getting audible swallowing, then none of this ounces of milk stop matters what I would say and notice that this is my smallest point. Nowadays, we have scales that measure kid to within two grams accuracy so you can put the kid on their pre test and then have the breast feeding. And then you could have the baby weighed after the breastfeeding, and you could tell how many ounces gained again. I have very mixed feelings about that, because if the mother comes away and says, Wow, look at how much you got that really boost her self confidence. But if the baby didn't do so happy that day or that moment or that time that she's really kind of down on herself and honestly, you know, it's just like adults. We don't always eat exactly the same or behave exactly the same, whether it's eating or anything out.

spk_1:   42:10
Yeah, I can see where that may not be good psychologically for the mother. Yeah, and it makes the whole breast feeding experience to clinical.

spk_2:   42:21
This is what I call perform in pressure, leanna.

spk_1:   42:24
Dry heat, right? Exactly. I feel the same way that would be. That would have really stretched me out. I think. What can a mom do when she is feeling so stressed? How can she relax and actually enjoy the breast feeding experience? I think not having to do that performance that you were just looking about. What else can we do, Marie?

spk_2:   42:43
Let me be clear. There is a time when you kind of got to endure that performance pressure, but you can't get too hung up on exactly what those numbers are exactly every time because it's human beings, and that includes babies. We don't elect the same company out minutes a day, though I brush my teeth while you know, probably a little less today than yesterday, some busier today that kind of stuff, so try not to get too worried about those things. But I think one of the things that mothers need to be able to do is tap. Their own natural resource is, and the first thing that comes to my mind is Guess what? Ah hormone called prolactin. Now Prolactin is pro meaning four and Laxton, meaning milk. This hormone is in all mothers bodies, or at least all well, Mother's bodies. And it not only is four milk, but it has this effect of helping the mother to relax. When I teach my comprehensive course, I show Ah, mother dog who has nine little puppies nursing, Mind you. Now she's only got eight Pete, and she looks just like so vegeta out and that that out look, is the fact off prolactin The mothers should be able to recognize when that hormone kind of pops in the place. But they got to go with it. They can't fight it, so that's a big piece. I think there are a number of relax ation techniques that I would recommend. Breathing is absolutely the number one. I could talk about that for way longer than your show, but the other one is skin to skin contact, and one of your guests mentioned that earlier I think it was Lauren and skin to skin contact. We all think about it as being beneficial for the baby, and it absolutely is beneficial for the baby. Unquestionably, no doubt there, but it is beneficial for the mother. Now let's think about this. If we as adults, never mind being women are mothers. If we as adults just have a bad day, what do we want to dio? We want somebody to give us a hug or maybe wantto slide in the bed next to where spouses and snuggle up and just kind of just feel warm and cozy and skin. The skin is good or skin. The almost skin is good. This is why we do this, because skin the skin helps us to relax and settle down. Usually, when I teach professionals, I reach out and I do a hand shake. And then I asked the group, Could I have faxed that handshake? And of course, everybody laughed. But Marie, a handshake is skin to skin contact, you know. Help me re land was with one another.

spk_1:   45:34
I think you're absolutely right. And I know I used to be a teacher of the death. Before I started my family, I would definitely go stand behind my students. And if they were really struggling, I put my hand on their shoulder and in crying them

spk_2:   45:49
I think you

spk_1:   45:50
and it wasn't skin to skin because obviously they had clothes on. But gesture, contact just that Reassurance that I'm gonna help you through this. You don't have to go through it alone. And it's with the breast feeding. I was really thrilled that both of the moms actually were given that skin to skin contact opportunity That was not encouraged. 20 years ago, when I was in the hospital with Ally

spk_2:   46:09
20 years ago, it was on the herd off. No, it is starting to be the norm. I was fighting for the at 20 or 30 years ago, and they frankly thought I was not okay. But now there is a Thanh of research to show how effective it is. But whether without the research, don't you just know from your days of teaching for example, that human contact that we crave?

spk_1:   46:34
Mmm, apparently well, let's talk about what is probably the biggest myth about breast feeding a baby with a congenital heart defect, and that is what my son's doctor told me, which was it was too much work. It was hard for him to immerse.

spk_2:   46:50
Wish I had a nickel for every time after that. Marie Brother. Well, first of all, you hear there with Children who have a CH defect, but to also here with premature babies. You hear it with low birth weight babies. You hear it with babies who have big ears, what it is, and there's just no truth to it now. This is where I think this myth originated, which is the baby has to actually make his jaws go up and down in a rhythmic motion when he's breastfeeding. Whereas if he has an artificial nipple, pretty much any kind of trunk on it is going to get the milk to come out. So I think that's how people got this goofy idea. But it depends on how you define work. There have been a number of studies that show, actually that baby's oxygenation levels are very much better. Hello, better when they are breast bad and when they are held skin to skin and more. And I think mentioned kangaroo, mother care, skin, the skin and kangaroo mother care more or less equivalent, they're technically not equivalent. Good enough for this show that you will see that babies will in fact have better oxygenation rates better P C T 02 levels that their heart rates are more stable. They have pure isolations with skin to skin contact. There are so many studies that show how beneficial this is. So I think that this is just like, kind of this myth that has floated around that Ms Anna was going before I was a nurse. And I'm still hearing it today. There is not a scrap of science that I'm aware off that actually substantiate that breastfeeding is more quote work in the sense of oxygen consumption, their utilization.

spk_1:   48:42
I'm so glad to hear that, because as a mom, that was my gut instinct as a mom. It was millions in Bangor, Lawrence and I think that never forgot which one told us that she just trusted her gut. And amen was that? She said, Oh, well, it was during the Christmas holidays, so we decided not to bother the doctors. I just trust are good. I agree 100% that I think the breastfeeding is much less work, if nothing else, just because there's the hormones that are released by the mother. But I can't help but wonder if the baby doesn't get some beneficial effect from that as well.

spk_2:   49:21
Almost certainly really. Almost certainly

spk_1:   49:24
in a party world, Marie women would never have to worry about being able to breastfeed their babies that we heart Mom. Our world is turned upside down the minute that we're told our baby has a heart defect and it's going to need surgery. In a perfect world, if a woman found out in utero she was going to have a baby with a PhD and that she wanted to proceed the baby tell us what she could do to optimize her opportunities for breastfeeding that baby.

spk_2:   49:51
Well, in my mind, the first thing that would be the most important would be to educate herself about my three favorite words milk production, milk, ejection, milk transfer, and that is critical for any mother of any baby for any reason. Okay, producing the milk and then adjusting the milk that is heading a letdown and Thirdly, milk transfer, which I talked about a few minutes ago. And I said, If you're not hearing the baby swallowing, then you're not getting good. Don't transfer. So I think just understanding that those three things have to happen that's critical. 20 years ago, I would not have said this, but now I would tell you skin to skin contact, skin to skin contact and more skin to skin contact as Martin and for as long as possible, meaning if you could hold your baby for at least an hour, that would be excellent. Holding the baby for two or three minutes does not necessarily give you all these benefits that I'm talking about. So I would educate myself and I would be an advocate for myself. And I would line up my husband, my mother, my Grady, Aunt Millie or anybody else to be an advocate for me. I think I would have some familiarity with some general techniques, like, for instance, the skin to skin contact. But I don't really look into things like nursing supplementary is and other gizmos, and I don't say gizmos in a negative way. I mean, these things are out there and there. They're hopeful for some kids. I think that we, as health care professionals, need to help the mother to mobilize her physical, her mental and her spiritually and social resource is. And if the mother can mobilize those spirituals physical, mental and social resource is she's halfway home because that comes to the last point that I would say is critical, which is her confident. You know, Derek, Jealous said in 1991 about the importance of confidence. And people probably get sick of me saying, What's the most important organ in the body for breast feeding and what a mother's tell me? They tell me, uh, the breast and I say, No, not at all the brain. The brain is the most important organ that you have to believe. You can do it. Have confidence, Believe in yourself. Everybody will believe in you. And just remember your baby doesn't know whether you've done this before or not. I can't tell you how many hundreds of women I've told it to. You know, your baby thinks you're doing this just great. He's never had another mother, usually Mother's laugh when I say that, but it's true, it's true it's true. Whatever you've got to do to build your confidence, get that support. Mobilize those resource is all of the rest of it is teachable and learn herbal. You know what I'm saying?

spk_1:   52:55
It is. Well, Marie, I'm gonna have to take a really quick break, and we just have really gone in great depth. I think about how we can help these babies with congenital heart defects and help the moms to successfully breastfeed them. Let me take a real quick commercial break, and then we'll have to say goodbye to everyone. Thanks, Murray

spk_2:   53:15
already. Thank you.

spk_5:   53:17
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_1:   53:51
Welcome back to our show heart to heart with Anna Chauffeur, the congenital heart defect community. We have just had the most amazing show. I am so thrilled that I was able to bring your heart pumps to have been successful with breast feeding their babies and Marie being Couso, who for decades has been helping women and families and especially their babies to successfully breastfeed. This has just been such an empowering episode for me. I'm just thrilled that we were able to do this. So thank you, ladies. We have one minute in the studio together. So I'm going to ask you in turn if you have a question for one of the other guests and then we're gonna have to close our shoot for today. So, Amelia, I'm going to start with you. Was there anything that she wanted to ask Lauren or Marie?

spk_4:   54:39
Not that I was gonna ask anything. I was just gonna say I'm still glad to hear Lauren story and Marie's advice because it made me feel like I'm not the only person who thinks that it's so stressful and and you're talking about trying to relax while you're pumping or nursing and all the anxiety that goes with it. So, So nice to hear that. It's not just me. It's not just new dressing, is everyone else feels the same way.

spk_1:   55:02
That's an excellent comment. I couldn't agree with you more. Okay, Lauren, how about you? Do you have a question that you would like to ask Amelia or Marie? Or a clock that you'd like to make?

spk_3:   55:12
Yes. I don't have any questions that I wish I would have heard this when I was pregnant with Addison. And I really hope that their listeners, that here, this today and are encouraged to breastfeed their babies That's my passion is give encouragement to those moments that are struggling with doubt.

spk_1:   55:28
Well, that's beautiful. And I do believe that the moms who are pregnant with the HD baby who here? This will be encouraged and empowered to try to do the breast feeding, even if it's a struggle. You two ladies talked about how it was a struggle for you at different times. And yet you were successful and you have done it. I'm just thrilled to see the success stories that we're hearing now and now I'll turn to Marie Marie. Did you have something you wanted to ask these two moms or a comment that she wanted to make. I would

spk_2:   55:57
suggest that people look at a study by Sacha Leader, which came out in 2012 talks a little bit about the issue of the too much work. And also I would like to say that there are more than 200 studies, probably more than 300 studies that show the efficacy of skin to skin contact. These are superb high level studies and not only the efficacy, but it also shows that there are no adverse that is negative bedroom. So therefore we all need to be doing it.

spk_1:   56:27
I agree. I agree. I think it would make a huge difference in a lot of these babies lives if they could be touching their mommies And like you, said Marie, as long as possible, not just for a minute or two here and there. And it's difficult when you have lots of tubes and things attached your baby. But it's not impossible. It's not impossible. And so I think we need to make more of an effort to have that skin to skin contact. Ladies, you were awesome. This was a fabulous show and thank you. Thank you so much for coming on.

spk_2:   56:59
Thank you. Anna.

spk_4:   57:00
Thank you for having us.

spk_1:   57:02
You all were wonderful. And that this episode of heart to heart with Anna, please come back next week on Tuesday of noon, Eastern time when our topic will be working parents versus stay at home Parents. Until then, please find it like us on Facebook. Check out our website heart to heart with anna dot com. And remember, my friends, there is