When a Baby Needs a Heart Transplant

Returning Guest, Dana Henning, shares with Anna what it was like for her family to find out in utero that her baby would be born with hypoplastic left heart syndrome and how they were prepared for their son to need surgical intervention but how they were in for a greater shock after he was born. Dana reveals the unusual conditions regarding her son's physiology that forced the family to accept that the only hope for their son to lead a normal life was a heart transplant -- and he couldn't wait. In this episode, Dana shares with Anna what it was like for her family to wait in the hospital until after her infant son actually received the gift of life -- a heart transplant -- within the first months of life.

Transcript

Anna: 0:05

Welcome to Heart to Heart With Anna. I am Anna Jaworski and the host of Heart to Heart With Anna. This is season 12 and our theme this season is Organ Donation and Transplantation. Today's episode is called When a Baby Needs a Heart Transplant. Dana Henning, is mother to Evan, who was born with Hypoplastic Left Heart Syndrome and a constellation of other congenital heart defects including total anomalous pulmonary venous return, often know as TAPVR, and stenosis of the pulmonary veins. Evan had two open heart surgeries before his first birthday. The first being a hybrid Norwood procedure at one-and-a-half weeks of age. Evan's complex heart condition has spurred his mother to become a vocal advocate for the congenital heart defect community. She's here today to talk to us about When a Baby Needs a Heart Transplant. In segment one we'll talk to Dana about her son's congenital heart defect. Segment two will focus on her child's need for a transplant. And in the final segment we'll look at the psychosocial effects of having a child with such a complex medical condition. Welcome to Heart to Heart With Anna, Dana.

Dana: 1:13

Hi, it's nice to be here. Thank you for having me.

Anna: 1:15

Well, I'm happy to have you on the show, again. This is the first time for us to do a show that's not live, so I know a lot of people may think that all of our shows are live, but we usually prerecord our shows and Dana did call in and talk to me about the Central Texas Congenital Heart Walk. But this is our first time to do this kind of show. So welcome onto the regular type of show, Dana.

Dana: 1:39

Okay, very good.

Anna: 1:40

Well, let's get started by talking about Evan's, congenital heart defect. How was it discovered? Was it discovered during an ultrasound or was it after his birth?

Dana: 1:51

We actually went to have his full anatomy scan at week 19 at just our regular OB and they were not able to see as much of the heart as they wanted to see, so they had us come back two weeks later and they said,"Well, we're still not able to see what we want to see. We're going to send you to the perinatal specialist." So at week 22, we went to the perinatal specialist for the first time and that was when the bomb was dropped on us. Your child has Hypoplastic Left Heart Syndrome. He copied a piece of paper out of an encyclopedia about it, and sent us home with it. He also said that he had a common atrium, basically had a hole in the heart where all four chambers came together. Those two we knew starting at week 22 of the pregnancy.

Anna: 2:34

So you said that you went to the first scan, they said,"Oh we can't see everything. We're going to schedule you again." Did that scare you or were you just thinking, oh well, this is a technological problem?

Dana: 2:44

Well, you know, they don't want to scare you. So they kind of, they kind of play it off like,"Well we just weren't able to see what we wanted to see. You know, he probably wasn't turned the right way or something. So if you'll come back in a couple of weeks, we'll look at it again." And then even at that point, they don't tell you the details at that point and they just say,"We'd like for you to make an appointment with a perinatal specialist. He's more specialized and he can get a better look at the heart and then kind of go from there." They said,"It's probably nothing but" and, that's kind of the way, the way that they made it sound. So that's what we anticipated.

Anna: 3:17

Okay. So he really didn't scare you. You weren't thinking,"Oh my gosh, this means something's wrong with my baby's heart." You were just thinking,"Oh, I'm going somewhere where there's better equipment."

Dana: 3:27

And, and so when we went to him at week 22 and then he pretty much as we call it, dropped the bomb on us of"Oh, your child has Hypoplastic Left Heart Syndrome" and all this. I mean, we were just, you know,"Can you explain to us what that is?"

Anna: 3:40

Right. I was shocked that you said that he's just Xeroxed a page from an encyclopedia and gave it to you. So he didn't even have any material about that?

Dana: 3:50

Yes. And that's what I still look back on that and I'm thinking how, because now you know, knowing what I know now, this was from 2011. You know, when that was, and my son will be seven next month. So I'm like, we expected the same thing, more material and it was just the copy out of the encyclopedia.

Anna: 4:08

Wow. So was that all that he said or did he say,"Okay, I need you now to see a pediatric cardiologist" or, I mean, was he eager to get rid of you, I guess is what I'm wondering because I'm sure this was a huge shock and I mean even for him, but also for you.

Dana: 4:26

Between my husband and I, he's kind of the detail person and I'm kind of more the overall person. So I expected he would catch the detail, which he normally does, and I would pick up on that and make it all better and make it all together, you know, make it sound where we could talk to other people about it. And my husband said,"Honestly," he says,"I didn't hear anything after heart defect." We had tried so hard to... Evan was a child born of in vitro fertilization. So we had lost three children before him, so we were really excited about this pregnancy. So when we found this out it was just devastating.

Anna: 5:03

That would be devastating. Did this doctor who diagnosed it give you any kind of prognosis or was he just referring you on to somebody else?

Dana: 5:12

He said that we would continue to meet with him just to watch certain things about the heart anatomy. We did go to a cardiologist, they did the echocardiogram as much as they could do in utero, but then the perinatal specialist just really shocked us was he's like,"I'd like to do amniocentesis because that will show us a little bit more." And then on top of it he's like,"Well, you know, you can, you can abort. It's not too late to a abort." And I was like,"Whoa, hold on a second. No, that's... We're not, we're not here for that. We, we want to know what we have to work with".

Anna: 5:48

Yeah.

Dana: 5:49

So it was a lot.

Anna: 5:52

That's a lot to process. Can you believe that seven years ago that was even really addressed considering the success that they have with babies with Hypoplastic Left Heart Syndrome now?

Dana: 6:05

I know. Exactly.

Anna: 6:06

That's what's hard for me to believe. I mean abortion wasn't an option for me because I didn't find out until after Alex was born. But what surprised me was how many mothers contacted me later telling me that that was the first thing that the doctor said to them.

Dana: 6:21

And it was pretty much one of the first things he told us too, which was just, I mean, I get chills even thinking about that right now.

Anna: 6:27

Me too. I have, I have goosebumps right now.

Dana: 6:31

Yeah. I've got a seven year old running around, you know? Why would you, squash that? You know?

Anna: 6:37

Exactly.

Dana: 6:38

I don't know. Let's just say he doesn't get a Christmas card every year. Let's just put it that way.

Anna: 6:47

Listen, was there anybody after that diagnosis, who gave you hope?

Dana: 6:51

Well we pretty much just watched all of it, you know, we'd done echocardiograms, we did sonograms. We did like the whole nine yards all the way through until I had him. They decided that the way to address this was to have a team ready for him when he was born. At 38 weeks, 39 weeks, they decided to just make an appointment for me to come in and get induced and that they would have a team ready for him at that time to address whatever issues that they came across. You know, every time I went to the OB, my big thing was I wanted to hear the heartbeat. As long as I heard his heartbeat, I felt like everything would be fine. When we got to the point of delivery I ended up having to have a C-section, which was not a problem, and then they told my family and friends that were there because you know, everybody knew what was going on that they'd be able to see him. And my mom got a little upset because they really rushed him past everybody that was lined up in the hallway because they wanted to address what was going on with heart. And so those next two, three days were pretty rocky, just real hard to get through. But we did it. They ended up doing... We had him here in Austin at Seton Main Hospital and they transported him to Dell Children's Hospital, Dell Children's Medical Center, and they prepped him to do a heart cath on day three. But the cardiologist that was on staff at the time told us a pretty slim prognosis with things. She's like,"I just don't know. I see some abnormal stuff with the stenosis of the pulmonary veins." And she said,"I'm just not sure if he's even going to be a candidate for transplant, but we'll do the heart cath and we'll see what we get." And what heart cath brought with it was four other heart defects that they found outside of two that we already knew.

Anna: 8:35

Wow.

BHP Promo: 8:37

Anna Jaworski has written several books to empower the congenital heart defect or CHD community. These books can be found at Amazon.com or at her website, www.babyheartspress.com. Her best seller is'The Heart of a Mother,' an anthology of stories written by women, for women in the CHD community. Anna's other books,'My Brother Needs an Operation,''The Heart of a Father' and'Hypoplastic Left Heart Syndrome: A Handbook for Parents' will help you understand that you are not alone. Visit babyheartspress.com to find out more.

HTFBabyBlues: 9:21

Home. Tonight. Forever by the Baby Blue Sound Collective, I think what I love so much about this CD is that some of the songs were inspired by the patients. Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazon.com, Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects. Enjoy the music. Home. Tonight. Forever.

Announcer: 9:57

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@HearttoHeartwithAnna.com. That's Anna@HearttoHeartwithAnna.com. Now back to Heart to Heart with Anna.

Anna: 10:17

Right before the break, Dana, you were telling us that you already knew that your son had Hypoplastic Left Heart Syndrome, but when they went in and did the cath, all of a sudden they discovered four other heart defects. Tell me a little bit more about that.

Dana: 10:31

The four other heart defects basically without going into detail about each one of them told us that we were not going to be able to do the three-stage surgery, that most of your Hypoplastic Left Heart Syndrome kids have. And that basically his only hope was transplant at this point, was a(heart) complete heart transplant.

Anna: 10:50

Oh wow. And so you had no idea about that in utero?

Dana: 10:56

No, we thought the whole time we planned to do the three-stage surgeries, the Norwood, the Glenn and the Fontan, you know, over a period of time, that sort of thing. And now we were okay, well they did say that the abnormal pulmonary veins would be okay. I think that was a big contention, but they said that basically he looked like he would be a good candidate for a heart transplant and that that would be pretty much the only option we would have.

Anna: 11:20

Okay. So you and I both live in the state of Texas and I know that you are near Austin. Was he born in Austin?

Dana: 11:28

He was. He was born in Austin at Seton Main Hospital. We were told during this process of being pregnant with him that we could choose to go to Dallas, Houston or San Antonio.

Anna: 11:38

So where did you choose to go?

Dana: 11:40

We went to Dallas to Children's Medical Center in Dallas because I have a lot of family that lives all around the Dallas area. We felt that was a really good support system for ourselves. Houston was an option, but we just, we knew people there but we had more of a support system in Dallas that it just seemed like it fit better.

Anna: 11:59

Right. And that's really important. A lot of times people will ask me, where should I go? And the first question I asked them is, where's your support? Because we know this isn't something that's quick; it's not a quick-and-easy procedure. This will be days, possibly weeks, possibly months, and so you need to be where your support is. So that's good because I was going to say Austin is not known for its heart transplant program and so I was wondering if you had to be transferred, but you were already in a place. We know that Dallas does have a good transplant program. Did you feel comfortable with staying there or did they recommend that you go someplace else?

Dana: 12:38

Honestly, I felt okay going to Dallas. We hadn't gotten used to Austin so much yet. So we didn't really think about being away from home that way. And something else that I thought was interesting was our insurance, our private insurance would have preferred for us to have gone to Houston. That was in-network for us out-of-network was Dallas. But they ended up making it to where we could go to Dallas and they would make it in-network for transplant services. So we, we went to Dallas and we really never looked back. I mean we just... This is where we need to be. We just went forward from there.

Anna: 13:10

So how did this affect the family? It sounds like you went to Dallas because you had good family support, but I imagine your family was just as surprised as you were when all of a sudden you found out we need to wait for a heart.

Dana: 13:23

Yes. Once we got to Dallas, they did his first open-heart surgery, which was the hybrid Norwood. He was a-week-and-a-half old and they did that particular surgery because they said it would hopefully hold him and his heart would function as well as it could for us to wait for the donor's heart. Our family came to the hospital. We spent six months in the ICU.

Anna: 13:46

Wow, that's a long time.

Dana: 13:49

It was. But looking back at where we're at now, it was totally worth it.

Anna: 13:54

It sounds to me like this event brought your family even closer together.

Dana: 13:59

It did. My brothers really worked around the corner so they could come up and grab me for lunch. That was, it was really nice. I haven't lived in Dallas in a long, long, long time. It was kind of nice to have everybody there and you know, even if they just popped in for 30 minutes or an hour, whatever, it was just nice to know that you could call somebody and say, hey, I need such and such and they could come up.

Anna: 14:21

Now this must have been tough on your husband or was it also hard on you? Did both of you have jobs in Austin?

Dana: 14:28

Actually he worked in Austin and I worked in Bastrop. I was the Center Director for the Sylvan Learning Center in Bastrop and my best friends owned the company for that location and they kept my position open and open and open and I, I finally kind of had to call him. I said,"We don't know how long we're going to be here. We don't know how long it's gonna take to get a donor's heart that's going to be perfect for Evan." Then once we learned about what the care might be afterwards, I said,"I don't think I'm coming back." The whole time being pregnant and looking at being a mom and all of this sort of thing, I thought, you know,"I'll probably stay home for maybe four or five months or maybe from the first surgery, the second surgery when we were planning for the three-stage surgery..."

Anna: 15:08

Sure.

Dana: 15:09

But I never thought I'd be a stay at home mom for this many years. It was a completely different mindset for me.

Anna: 15:16

Yeah.

Dana: 15:17

My husband came up on the weekend, you know, he stayed through obviously the first surgery and went back home, I want to say probably about three weeks later and then he came up on the weekends. He had a life away from us all week long with updates for me and I stayed at the Ronald Mcdonald House. That worked out really well for us and he knew that the only time he had was the weekend unless something big had come up and he would stay for longer. But yeah, it was completely... I mean I didn't come home except three times in nine months. It was, I don't know, I mean I know it didn't really feel difficult at the time because you know, you're with your child and to me, that's what made the difference for me. But I was constantly having him,"Okay, it's getting colder. Can you bring these clothes, can you bring..."

Anna: 16:05

Right.

Dana: 16:05

And having him bring Evan different things for him. And it was like a shuttle service basically.

Anna: 16:10

So in some ways it sounds like maybe it was harder for your husband than it was for you because you were there every day. You were helping to take care of the baby. You got to see everything that was going on. Where as your husband was kind of in the dark. How, how long did it take to get there?

Dana: 16:26

Depending on what time of the day he left, normally he would get to us by seven, 7:30. He tried to leave at 3:00 on Friday.

Anna: 16:35

Oh gosh.

Dana: 16:37

And he'll tell you that his job was to get me away from the hospital. He would take me away. We would go eat or whatever and then you know, then we'd go back to the hospital.

Anna: 16:47

Because he understood the importance of giving you a break. What a sweet guy. I mean this was... I'm sure this was probably the most stressful thing that you had ever been through.

Dana: 16:58

It was. And what was even more bizarre at that time was, you know, Evan had his first open heart surgery at a-week-and-a-half old and so that was about the middle of August and at the end of August was when the big fires hit in Bastrop. So we had to actually come home and evacuate.

Anna: 17:15

Oh my gosh.

Dana: 17:16

And that's the point that he kind of hit his low. He's like,"My kid's in my ICU fighting for his life and I'm having to come home and evacuate, figure out what to do with the animals, figure out how to live without being in the house, if at all possible." Thankfully our house was spared. We had another fire that was closer to our house, but not the big one. It all worked out, but that was the lowest point for him because he wondered what else was going to go on. You don't really want to ask that question.

H2HwMichael: 17:43

"Texas Heart Institute were offering us a mechanical heart and he said,"No, Dad, I've had enough. Give it to someone who's worthy."""My father promised me a golden dress to twirl in. He held my hand and asked me where I wanted to go.""Whatever strife or conflict that we experienced in our long career together was always healed by humor." Heart to Heart with Michael... please join us every Thursday at noon Eastern as we talk with people from around the world who have experienced those most difficult moments.

HUG Message: 18:20

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.

Anna: 18:54

Wow. I can't believe that you guys were having to deal with those fires in Bastrop. But for those of you who are not from Texas, you don't understand the seriousness of this. It was kind of like the seriousness of the fire situation here that happened in California were acres and acres are burned and I do remember hearing about that in the news. It was just terrible. And here you're dealing with having a son in the ICU at the same time. So tell me, when did things get better? Tell me about when Evan got his heart.

Dana: 19:23

Evan received his donor's heart at six-and-a-half months old. The day that they came in to his room, now, I will tell you that Evan reached milestones that they said he would not. They always told me that he would never come off of oxygen before he received his heart and he came off of oxygen. They told us he would never get out of ICU and go to the heart floor and at six months he went to the heart floor, which means he was well enough to go to the heart floor.

Anna: 19:50

Yeah, he was stable.

Dana: 19:51

Six months old, he went to the heart floor. Two-and-a-half weeks later they came in his room, an entire team of everybody comes in his room. We've been waiting for six months. So you kind of get, not necessarily complacent. You're excited about it but you just kind of truck along with your life and wait for that moment. And they came in and the nurse coordinator turned to me. She said,"We have a heart for Evan." And I just kinda looked at her funny and she told me later. She said,"I don't think you believed me" and I said,"I think you are right."

Anna: 20:29

You were in shock.

: 20:29

So I was like,"Really? Like a heart. Like a heart!" It was so hard to just... My emotions and everything just to process that. And my husband was in Austin and I'm like,"I've got to get a hold of my husband!" And we had this system, I called him once, he doesn't answer, I call him twice, he doesn't answer. I call him the second time, usually he supposed to call me right back. It took me three times to get a hold of him because I can't call anybody else until he knows.

Anna: 20:52

Right, right, exactly.

Dana: 20:56

I was like,"Please answer the phone!" And then it was just a flood of people. Once I started calling people and people started calling other people. I mean we just had this flood of people up at the hospital and you know, they just finished Evan's feeds. They just checked him out. The thing about it, it's exciting, but the thing to keep in mind is they tell you"Just because it's, it looks like a good heart and it's and all these sorts of things, there's no guarantee."

Anna: 21:23

Right.

Dana: 21:23

Regardless of how excited you are, there's still this little thing in the back of your mind saying,"You got to be prepared just in case anything doesn't work right."

Anna: 21:31

It may not be a perfect match. So...

Dana: 21:34

Or there could be anything. Thankfully they took him back at eight something and we saw him the next morning. It was an overnight surgery and we saw him the next morning at 5:15 in the morning, I got to see my little boy's face and for the first time his little cheeks were pink. Like he had this perfect little pink face and I was like,"Holy cow, look at that!" You know, they got him prepped for his room and all of that sort of thing in the ICU. I looked at his fingers and his nail beds had always been kind of a bluish purple and now they look just like mine. They were pink. They were just little subtle changes that we noticed that it was like,"Wow! It's amazing when you get a heart that pumps the way it's supposed to."

Anna: 22:24

Yep.

Dana: 22:24

What a difference that makes in a person. And in this baby. So... In OUR baby at that.

Anna: 22:30

Yeah. So you waited six months and a couple of weeks it sounds like, and then you got the heart. How long was he in the hospital?

Dana: 22:39

We were released from the hospital on March 20th. He was in the hospital for probably right around seven-and-a-half months and then we couldn't leave to go home even at that point, even though he could be released from the hospital for the first time because when children are transplanted, you have to stay within a two-and-a-half-hour radius for three months post-transplant.

Anna: 23:00

Wow.

Dana: 23:00

We were able to take him to the Ronald McDonald House. They got us, uh, they have a transplant wing and so we went up into like a one-bedroom apartment that they had specific for transplant area. Nobody's coming and going out of that area except for those families. So we stayed there and we got to go home on Memorial Day weekend at the very end of May.

Anna: 23:21

Wow. Oh my goodness.

Dana: 23:21

For the first time with our baby.

Anna: 23:25

With the baby, and that's the important part with a baby who was pink and had a brand new heart. Well that must have been a huge adjustment though because now you hadn't been home for forever or I'm sure it felt like that. And you come home with this baby who had probably a pretty strict regiment of medications. Was he still on feeds at that point?

Dana: 23:46

Yeah, yeah, he was on continuous feeds at that point. So it was, you know, he was only, he has continuous feeds basically except for one hour of the day where we could bath him and that sort of thing.

Anna: 23:58

It must've been a huge change for your husband to all of a sudden have this baby home with special needs and his wife, he hasn't seen for months. So tell me what it was like for you after you all got home.

Dana: 24:10

My husband, Brian and I work as a team and that's the way we've done this for several years now. He is very hands on. He wants to know exactly how to take care of Evan and he wants to know how he can be a part of it. And so he was going to work still everyday, Monday through Friday. And then the weekend we were all home together. But it wasn't having to drive four hours to get through us this time. We were actually home.

Anna: 24:34

Right.

Dana: 24:34

At home with our cats and the cats had to get used to me and then now this baby. It was adjustments just because now we had the,"Okay, what do we put the medicine? Where do we put his equipment? Where do we put this? How do we make it to where everything's accessible? Can we use this crib or do we need the Pack-and-Play?" It's all that sort of thing. You find your normal; you find what works for you, you know, for that period and then as you need to adjust, then you adjust and it works pretty well.

Anna: 25:02

Well, you're a very flexible mom, too. But also it helped me to find out earlier in the interview that this baby was wanted and loved for probably years before he was even born. And because of the extreme efforts you had to go through just to get him. How did having this child affect you as a mother?

Dana: 25:23

Just to be a mom is something I've wanted... Goodness since probably I graduated from college. I've always wanted to be a mom and I've worked with children most of my life. He comes with his needs, and I will say this, a lot of people look at us and they go,"Oh my gosh! How do you do that? How did you do that?" You know, it's not a matter of how do you do something because I'm just a regular mom. I'm not specialized in any kind of anything medically or whatever. But you learn what it takes for your child and you learn how to move forward with them and how to learn what you need to learn to take care of them and then expand on that and you don't look back and go,"Oh, but..." I mean, I think you still kind of grieve a little bit because you didn't have a healthy child to begin with.

Anna: 26:09

Sure.

Dana: 26:09

Honestly, we have a child. He's alive. He is such a great kid. I can't even imagine. I think back on, you know, you can abort him and I'm like,"But you don't know this kid and just what we have!"

Anna: 26:21

And I know you're such a loving person. I bet you are the best mother, too.

Dana: 26:28

Well thank you. I do the best I can.

Anna: 26:31

Well, you're such a terrific advocate. I mean that's why you came on Heart to Heart with a Anna before because you were advocating for the entire congenital heart defect community. You've taken Evan and, kind of like what I have. It seems like you've taken on Evan and the whole mission to get out there and help others in our community.

Dana: 26:50

When I came home I didn't know anybody else in my area that had a kid with a heart defect, so my goal even working with Mended Little Hearts and visiting other cardiac patients now at the, at Dell Children's Medical Center, it's just wanting them to know you're not alone. There are others of us out here and you can call us or whatever. So it's just, it's my way of I'm kind of getting back if you want to put it that way because honestly if the science wasn't where it was and and medicine and everything weren't, you know, where it was when Evan was born, then we wouldn't have him here today. So what can I do to help that? What can I do to let other people know that first of all, you're not alone. Secondly, we are fighting to just beat this hopefully one day and that's just kind of I don't know. I guess that's my heart with it.

Anna: 27:38

I love it. That was so perfect. Thank you so much for coming on the program today, Dana.

Dana: 27:43

Thank you for having me and let me talk about my son.

Anna: 27:46

It was amazing. You have an amazing story. I just, I loved every minute of it, but that does conclude this episode of Heart to Heart with Anna. Thanks for listening today, Friends. Find us on iTunes and subscribe and remember my friends, you are not alone.

Announcer: 28:03

Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart with Anna, with your Host, Anna Jaworski, can be heard every Tuesday at 12 noon Eastern Time.