Raising Awareness of Ivemark Syndrome

If you've ever wondered what Ivemark Syndrome is, you need to listen to this program! Ivemark Syndrome is a very rare constellation of birth defects which typically include malformations of the heart. 

Julia Mayfield is and adult born with a rare genetic condition called Ivemark Syndrome. According to the National Organization for Rare Disorders, Ivemark Syndrome is comprised of: 1) an absent or underdeveloped spleen, 2) cardiovascular anomalies and 3) abnormal placement of the organs in the chest and or abdomen.  Julia’s heart is on the right side of her chest and she is missing her spleen. By the time she was nine, she had been through four open-heart surgeries, the final of which caused a massive stroke post-op. She also developed severe scoliosis and required surgery. She is joining us today to raise awareness of Ivemark Syndrome and share her experiences of growing up and adulthood with this condition.

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Transcript

Julia Mayfield:   0:00
The most important lesson I've learned is to never give up hope and to keep your faith in God because he's working miracles all the time. I've seen them firsthand and to live with no regrets. Because if you live with regrets, you'll miss out on something.

Anna Jaworski:   0:28
Welcome to "Heart to Heart With Anna," I am Anna Jaworski and the host of your program. We are in Season 14 and we're so happy you're here with us today. First of all, I'd like to give a shout out to our newest patron. Thank you so much, David Franco, for becoming a patron of Hearts Unite the Globe, or HUG, the nonprofit organization that funds this podcast. By pledging a monthly donation to HUG, David is helping us to grow our nonprofit so we can have more episodes of "Heart to Heart with Anna," and keep the program free of charge to the public. His donation, along with the other donations we've received will go toward the production cost of our podcasts, maintenance of our website, and toward the development of new programs. If you would like to help out to just head over to Patreon, that's www.patreon.com/hearttoheart and learn more about joining our team. Today's show features a Heart Warrior, and our episode is entitled 'Raising Awareness of Ivemark Syndrome.' Julia Mayfield is an adult born with a rare genetic condition called Ivemark syndrome. According to the National Organization for Rare Disorders. Ivemark Syndrome is comprised of an absent or underdeveloped spleen, cardiovascular anomalies and abnormal placement of the organs in the chest and or abdomen. Julia's heart is on the right side of her chest instead of the left, and she is missing her spleen. By the time she was nine years old, she had been through four open-heart surgeries, the final of which caused a massive stroke post-op. She also developed severe scoliosis and required surgery. She is joining us today to raise awareness of Ivemark syndrome and share her experiences of growing up into adulthood with this condition. Welcome to "Heart to Heart with Anna," Julia Mayfield.  

Julia Mayfield:   2:22
Hello.  

Anna Jaworski:   2:23
Well, I'm so happy to have you on the program today so we can learn about Ivemark syndrome. Can you tell us about this condition?

Julia Mayfield:   2:32
Well, from my knowledge It is a very rare genetic condition that affects the placement and formation of the body's internal organs. Like what you said, my heart is on the right side of my body. It is also flipped backwards and is upside down as well. I am missing my spleen, and my liver is midline.

Anna Jaworski:   2:52
Oh, wow! Wow. So what kind of problems has that caused you, Julia?

Julia Mayfield:   2:59
It just has caused me to be sick a lot more. I've never been able to play any sports. Well, any contact sports because they are afraid of me getting hit ...  

Anna Jaworski:   3:14
Sure.  

Julia Mayfield:   3:15
...on my liver.

Anna Jaworski:   3:16
Oh, wow. They're afraid of you being hit on your liver. They're not afraid of the impact on your chest.  

Julia Mayfield:   3:22
They're afraid of the impact on my chest. But they want me to really guard my liver.  

Anna Jaworski:   3:28
Oh, wow.  

Julia Mayfield:   3:29
Because instead of it being behind my ribs, it is midline, so it has no shield.

Anna Jaworski:   3:38
Wow, that's really scary.  

Julia Mayfield:   3:41
Yeah.

Anna Jaworski:   3:42
Wow. OK, so this is really a very rare condition, like you said. So,...  

Julia Mayfield:   3:48
Mmm-hmm

Anna Jaworski:   3:49
....what do you think our listeners need to know and understand about Ivemark syndrome and its history because I know you have a really unique story about learning about the history of Ivemork syndrome.

Julia Mayfield:   4:01
From my knowledge of what I think the listener should know is it was discovered in November of 1955 by a man named Biörn Ivemark. And you're right. I did have some contact with his grandson for a school project.

Anna Jaworski:   4:21
I just think that's such a cool story, Julia.  

Julia Mayfield:   4:24
I know, it's so neat!  

Anna Jaworski:   4:26
How did he find you?  

Julia Mayfield:   4:28
Well, there's a young man and his mother who made a Facebook page for him, and this young man also has Ivemark syndrome.  

Anna Jaworski:   4:40
Okay,  

Julia Mayfield:   4:41
So he contacted the Facebook page, and this young man is not able to comprehend or speak...  

Anna Jaworski:   4:49
Oh,  

Julia Mayfield:   4:50
...about it because he had a stroke and everything and his mom's like, 'he's not able to understand the whole concept, but I do know a young lady who has Ivemark Syndrome as well," and then she gave him my name. He looked me up on Facebook, and that's how it all got started.  

Anna Jaworski:   5:13
Wow. Okay, so tell us what the young man was doing for his project.  

Julia Mayfield:   5:19
He was writing a paper for I don't know what class it was for, but it was -they had to do an end of the year project. And they had to write about something that they found really interesting about their family. And so he knew his last name was Ivemark, so he looked into it, and his grandfather actually discovered Ivemark. So Ivemark Syndrome is named after his grandfather.

Anna Jaworski:   5:56
That is just such a cool story. So I'm assuming that his grandfather was a doctor?  

Julia Mayfield:   6:02
I think he was  

Anna Jaworski:   6:05
Okay, so I was just curious. Was he a cardiologist, or was he an internal medicine doctor? Because we know that the internal organs are displaced, and ... 

Julia Mayfield:   6:16
I don't know what type of doctor he was.

Anna Jaworski:   6:19
Okay. Okay. So you just know that this young man reached out to you, and that his grandfather is the one who noticed that there were certain people who had this combination of problems and he got his name put on to this syndrome. This, this is something that lots of doctors do; get their names put on a syndrome or a procedure or something like that.

Julia Mayfield:   6:43
That's like, I had a doctor when I was younger, Dr. Jacqueline Noonan and she discovered Noonan's Syndrome.

Anna Jaworski:   6:49
Exactly Yeah. Oh, my goodness. You have been touched by a number of celebrities in the medical field.  

Julia Mayfield:   6:56
Yep.  

Anna Jaworski:   6:57
Interesting. So you told me that online you met a mother whose son had Ivemark syndrome. Do you know anyone else who has the same condition you do?

Julia Mayfield:   7:08
No, I do not.

Anna Jaworski:   7:09
Wow. So there's not a support group online for people with Ivemark Syndrome or conferences or anything like that?

Julia Mayfield:   7:17
For Ivemark Syndrome in itself, no.  

Anna Jaworski:   7:21
Okay.  

Julia Mayfield:   7:23
They like to lump it with Heterotaxy Syndrome, which is different than Ivemark Syndrome. With Heterotaxy births there are one in 10,000 to one in 25,000 each year, but there's no sufficient estimate of occurrence for Ivemark Syndrome.

Anna Jaworski:   7:43
Oh, wow. How interesting. So, why do you think they lump Heterotaxy in with Ivemark Syndrome? Just because the heart is...

Julia Mayfield:   7:52
Because they have some of the same characteristics.

Anna Jaworski:   7:56
Okay, like with asplenia and with the heart being on the wrong side?

Julia Mayfield:   8:00
Yeah, you can have asplenia or polysplenia or, you know, your heart may be on the opposite side, or this young man that I became really good friends with him and his family. His heart is actually in the middle of his chest.

Anna Jaworski:   8:19
Interesting. So how did it make you feel when you found somebody online who had a condition like you?

Julia Mayfield:   8:27
Oh, I was exstatic

Anna Jaworski:   8:28
I bet you were

Julia Mayfield:   8:30
Because when I was younger, I always tried to find somewhere that I belonged or someone that was like me and I never could find someone. And then when I got into adulthood, that's when it all started coming together. And this young man's mother messaged me. My mom found his page on Facebook. She said, Oh, look, he's got Ivemark syndrome like you. And so I start messaging his mother, and then it all became, like one giant family friendship.

Anna Jaworski:   9:06
I love it!

Baby Blue Sound Collective Promo:   9:13
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."Texas Heart Institute were offering us a mechanical heart and he said,

Heart to Heart with Michael Promo:   0:00
"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.

Questions and Comments:   0:00
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 Jaworski:   10:39
Julia. Before the break, we were talking about Ivemark Syndrome and for those of you who are just joining us now, according to the National Organization for Rare Disorders, which is also known as NORD, Ivemark Syndrome is comprised of an absent or under-developed spleen, cardiovascular anomalies and abnormal placement of the organs in the chest and/or abdomen. And Julia was telling us that it is so rare that people often will lump Ivemark Syndrome in with Heterotaxy. But we were talking about how Heterotaxy actually is a very different syndrome, than what Iveemark Syndrome is. So Julia, let's start this segment by talking about your surgeries. Tell us about some of the surgeries that you've had because of your birth defects.

Julia Mayfield:   11:22
I've had four heart surgeries. The 1st one took place when I was a few days old. That was a Left Classic BT Shunt.  

Anna Jaworski:   11:31
Okay,  

Julia Mayfield:   11:32
It was used to reroute blood flow. My 2nd one followed at a year old, and that was when I had the central shunt put in, and that was to also reroute blood flow. And then I had a third one at three, and that was the Left Bidirectional Glenn Shunt. It was basically used to stabilize my heart. And then I had one at nine, the Fenestrated Fontan, and that was also to stabilize my heart because the way that my heart is, I do not qualify for a transplant.

Anna Jaworski:   12:13
Mmm...

Julia Mayfield:   12:15
And so they had to work with what they had.

Anna Jaworski:   12:21
Mmm-hmm. So you have a single ventricle heart, Julia?  

Julia Mayfield:   12:24
Yep. I do!  

Anna Jaworski:   12:25
Wow! Is that another of the characteristics of Ivemark Syndrome, that it's actually a single ventricle heart?

Julia Mayfield:   12:33
I don't think that, that characteristic is normal. Or normally a symptom of it.

Anna Jaworski:   12:41
OK,  

Julia Mayfield:   12:41
But I know there are some people with different syndromes or different heart defects that have a single ventricle.

Anna Jaworski:   12:53
Interesting. And you're an adult, so I'm wondering if you don't mind sharing what year you were born.

Julia Mayfield:   13:00
I was born in 1993.

Anna Jaworski:   13:02
Okay, because it's kind of unusual to get a Fontan at the age of nine.  

Julia Mayfield:   13:07
I know.  

Anna Jaworski:   13:08
Yeah. So were you having exercise tolerance, problems and fatigue when you were a little kid?  

Julia Mayfield:   13:16
As far as I know, I didn't.  

Anna Jaworski:   13:18
Okay, but you did have the BT Shunt. You had the BT Shunt early...and the Bidirectional Glenn

Julia Mayfield:   13:25
Yeah, I had the BT Shunt and the Central Shunt and then the bidirectional.

Anna Jaworski:   13:28
And you had the Bidirectional when you were three?  

Julia Mayfield:   13:30
Yes.  

Anna Jaworski:   13:31
I actually know a couple of adults who never got the Fontan. They're living with the Bidirectional Glenn, and they're doing fine. They're able to work and have families and all kinds of things.  

Anna Jaworski:   13:42
Yeah,  

Anna Jaworski:   13:42
But having the Fontan is like the icing on top when you have a single ventricle heart. That seems to be the typical progression of surgeries that people with a single ventricle heart have. So, wow! Lots of surgeries starting from a very young age. What kind of impact did that have on you growing up?

Julia Mayfield:   14:04
It was really hard being a little kid because all you wanted to do would be normal.  

Anna Jaworski:   14:09
Sure.  

Julia Mayfield:   14:09
And you couldn't be that because, like at school, you couldn't run on the playground or it really didn't affect my schooling until age nine.  

Anna Jaworski:   14:21
Right.  

Julia Mayfield:   14:22
Because I did suffer a stroke post-op and it did render me for a few months not being able to walk or to talk.

spk_0:   14:31
Wow. Wow. That must have been so scary because, by the age of nine, you're so much more aware of what's going on.

Julia Mayfield:   14:39
Yeah, and what was really weird is I had just gotten a bicycle for my birthday.  

Anna Jaworski:   14:47
Oh,  

Julia Mayfield:   14:48
and I had to leave because my last surgery was on July 3rd and my birthday on June 15th.

Anna Jaworski:   14:56
Oh, so you'd only had it for about a month?  

Julia Mayfield:   14:59
Yeah, and whenever I got my bicycle, like a couple days after my birthday, we had to travel to Cleveland, Ohio. And there I was operated on by Dr. Roger Mee.

Anna Jaworski:   15:16
Oh, my gosh! You had Dr. Mee?

Julia Mayfield:   15:19
Yes

Anna Jaworski:   15:19
I have so many friends whose children were operated on by him. For those of you who don't know, he traveled to the United States from Australia, and he is very well known for being an excellent surgeon. So Wow! Dr. Noonan, Dr. Ivemark, Dr. Mee I'm impressed! You've had a veritable who's who of doctors either working with you or who have created the nomenclature for the syndrome that you have. That is absolutely amazing, Julia. Okay, so, Dr. Roger Mee is the one who operated on you, and unfortunately, though you suffered a stroke.

Julia Mayfield:   15:57
Yes. My first word after my stroke, whenever I learned how to re-talk -halfway- was home.

Anna Jaworski:   16:06
Awe, yeah.

Julia Mayfield:   16:08
And I was in the hospital and my mom and my stepdad, at the time, didn't quite understand because they thought I was talking about home being heaven.  

Anna Jaworski:   16:20
Oh,

Julia Mayfield:   16:21
and that's not what I meant. I meant home is in my actual home.  

Julia Mayfield:   16:27
Yeah!

Julia Mayfield:   16:28
And so whenever I started talking and everything and saying home, then they couldn't get anybody else to listen to them. Well, Dr. Mee was doing rounds and they're like, "Hey, you gotta come see this," and they try to get him in the room and letting him hear me say it. But I was stubborn.  

Anna Jaworski:   16:52
Oh, no!

Julia Mayfield:   16:54
Any 9 year old would be,  

Anna Jaworski:   16:56
sure,  

Julia Mayfield:   16:56
and I did not want to say it.  

Anna Jaworski:   16:58
Oh,  

Julia Mayfield:   16:59
so they're like, okay, stand outside, out of the window. But, you know, kind of look in the window and they were making me do different eye movements. And they said, "Where do you want to go?" and I said, "home," and Dr. Roger Mee was like, "That's it. She's going home."

Anna Jaworski:   17:19
Awe! So he understood that you really needed to get out of the hospital and I'm sure this was not the first time he had seen something like that. Tell me about what kind of support you needed to be able to get home. I'm sure you had to do some rehabilitation. Tell me about some of the professionals who had to work with you.

Julia Mayfield:   17:39
I had to work with occupational, physical, the vocational therapies. They came like every so many days every week and did stuff with me. And I did relearn how to ride my bicycle.

Anna Jaworski:   17:58
Yay! You had a great motivator there, didn't you?

Julia Mayfield:   18:02
Yeah, and I did have to go home on a feeding tube.  

Anna Jaworski:   18:08
Oh. Wow.  

Julia Mayfield:   18:10
Since it was placed in Cleveland, Ohio, the doctor's here did not want to touch it.  

Anna Jaworski:   18:17
Sure.  

Julia Mayfield:   18:18
My mom kind of did a no-no  

Anna Jaworski:   18:21
Oh, no.  

Julia Mayfield:   18:21
They were like, "Oh, well, you're gonna have to travel back to Cleveland and have them take it out." Well, my mom was like, "No, we can't travel back." So she sat me on the floor and pulled it out.

Anna Jaworski:   18:33
(gasp) Oh, my gosh. Did it hurt?  

Julia Mayfield:   18:38
It felt weird.  

Anna Jaworski:   18:39
Yeah,

Julia Mayfield:   18:39
because it was like going up and out my nose.

Anna Jaworski:   18:43
Oh, okay, so you had an NG tube in your nose?  

Julia Mayfield:   18:45
Yeah.  

Anna Jaworski:   18:46
Babies pull those tubes out all the time, So Okay, I'm sure it did feel weird.

Julia Mayfield:   18:52
They can either stitch it in or they can just have a little weight at the end of it, and thank goodness mine only had a weight.

Anna Jaworski:   19:00
Oh, well, yeah. Because otherwise that might have really, really hurt.  

Julia Mayfield:   19:04
Yeah.  

Anna Jaworski:   19:05
Wow. Did you see a speech pathologist as well?

Julia Mayfield:   19:08
Oh, yes. Yes, I did.

Anna Jaworski:   19:11
So you had a whole team helping you, didn't you?

Julia Mayfield:   19:14
Yeah. Okay. I had my stroke in July, and by late August, I was already back in school.

Anna Jaworski:   19:25
Wow. Do you actually have fairly quick recovery?

Julia Mayfield:   19:29
Yeah, but I had to deal with speech therapy, basically the rest of my elementary school, which was -yeah- three years.

Anna Jaworski:   19:43
And did you also have to do physical and occupational therapy for those three years?

Julia Mayfield:   19:48
No, I only had to do physical and occupational therapy for a couple of months afterwards. I had somewhat relearned how to walk in the hospital and they were doing a little bit of occupational therapy with me and everything there. But I really didn't have to carry it over for very long.

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Hug Message:   20:51
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 

Anna Jaworski:   21:29
Before the break, we were talking with Julia about growing up with Ivemark Syndrome and the surgeries she had and recovering from a stroke. It was actually rather involved, but I want to talk in this segment about life today. Julia, you're an adult now living with Ivemark Syndrome. So tell us what your life is like living with this syndrome.

Julia Mayfield:   21:51
It's very different because you have people looking at you like you are weird, but for a lot of reasons, my life is a lot better than my childhood. I got married six years ago to my lifelong partner, and ever since I've been with him, my health has been a lot better than it was previously. I was in and out of the hospital a lot due to various illnesses, and the doctors didn't even know what it was

Anna Jaworski:   22:28
That would be hard. Let me back up a little bit, though. I've seen pictures of you and I've actually spoken with you on Skype and your beautiful, there's nothing wrong with you. Why would people act like there's something weird with you?

Julia Mayfield:   22:42
Because I don't normally show my scars, like most of my shirts are like a little bit longer, so they don't show my scar. And so whenever I'm out in public, if I cough because I get really bad mucus buildup, they look at me like I'm sick or something, and they're like, okay, we don't understand what's wrong with her. And when I was in middle school, my mom actually got in trouble one time because she parked in a handicap spot because I had a handicap placard and they're like," Well, you can't park here because, you know, you don't have a handicap," and shes like "my daughter," she said, "She's got a Handicap. That's the only reason I park here." I think she's either dropping me off or picking me up. And they got into a kind of a little altercation. Nothing physical.  

Anna Jaworski:   23:46
Yeah, well, this is a problem I've heard from so many people, Julia. Where many heart patients look normal. They're not crippled. They don't walk like they have cerebral palsy. They're not in a wheelchair or scooter. And so people think you're fine. You're not supposed to be parking there. And people just have no idea. They don't see that if your mother had to park very far back in the parking lot and you had to walk a really long distance with a single ventricle heart that by the time you got to your classroom, you'd need a nap. They don't know that they just don't see.

Julia Mayfield:   24:24
Well, see whenever I was in high school, my school had built on, like the next year from my freshman year. And so I actually had two different lockers, one downstairs, and one upstairs, by two different classes, because I couldn't carry the books.

Anna Jaworski:   24:45
Right, Right! It's really heavy. And even if you had a backpack, you had scoliosis. You had problems with their backs, so that would not have been advisable.

Julia Mayfield:   24:55
Well due to scoliosis, I did have a rolling backpack, but in high school, they really don't want you to use them a lot, so it was really tough on me.  

Anna Jaworski:   25:07
Sure.  

Julia Mayfield:   25:09
And my high school was a two-story school, so luckily they had a elevator. And then whenever they added the addition on, they put in a second elevator and I was like, Oh, thank God!

Anna Jaworski:   25:22
Yeah, that had to have made things easier for you. Did you have a special key, or could anybody use the elevator?

Julia Mayfield:   25:30
I had a key that I could use. There were several people with illnesses, some people in wheelchairs or whatever in the school and each one of us that had to use the elevator or people that were on crutches or whatever...  

Anna Jaworski:   25:47
Sure  

Julia Mayfield:   25:47
...that had to use the elevator, had a key.

Anna Jaworski:   25:50
Okay. Now you're 26 years old, tell us what you're hoping for the future. I know you're married to a man you adore. What do the two of you hope for the future?

Julia Mayfield:   26:03
we hope to one day own our own home.  

Anna Jaworski:   26:06
Oh, that would be wonderful!  

Julia Mayfield:   26:07
Right now you're renting.

Anna Jaworski:   26:09
Mmm-hmm

Julia Mayfield:   26:10
As far as me, I want to become a motivational speaker and travel the world.  

Anna Jaworski:   26:16
Oh, wow!  

Julia Mayfield:   26:18
I know that a lot of people get hope from me because of what I've been through. And I think more people would love for me to be able to travel. I have a friend and Belize, she is a big support for me because she's like, "You got this!" and she wants me to be able to one day come to Belize. I hope to write a book about my experiences with Ivemark Syndrome and get it published. I have a very giving and carrying heart for people that are in need. I started a fund with a church that I was in where we took a pop cans, and whatever money we got from taking those and getting them crushed would go into this bank account and it helped fund kids being able to go to church camp.

Anna Jaworski:   27:20
That's wonderful. So you're definitely a philanthropist and you care about others. Are you hoping to connect with other people with Ivemark Syndrome when you travel the world?

Julia Mayfield:   27:31
I hope so. I know it's more common in different parts of the world.  

Anna Jaworski:   27:37
Oh, really?  

Julia Mayfield:   27:38
Yeah, I think it's like Europe or somewhere where it's more common because I actually met a girl who had a congenital heart defect when I was younger and she was from Russia or somewhere. And it was very, very neat because you would never have known until we got to talking to her. I don't know if it was our parents or grandparents or who it was, but they're like, Oh, yeah, she had "dah, dah, dah..." and so that was really neat. She came from a different country to America, and she had a congenital heart defect.  

Anna Jaworski:   28:22
Now, she didn't have Ivemark Syndrome. But was this the first person you had met who also had a heart defect?  

Julia Mayfield:   28:31
Yes.  

Anna Jaworski:   28:32
Oh, my goodness. So that really did have an impact on you and she was from another country from across the world. Wow. Well, what advice do you have, Julia for other families who have somebody living with Ivemark Syndrome? What would you tell a heart warrior is the most important lesson you've learned in growing up with this very rare condition?

Julia Mayfield:   28:53
The most important lesson I've learned is to never give up hope and to keep your faith in God because he's working miracles all the time. I've seen them firsthand. And to live with no regrets because if you live with regrets, you'll miss out on something.

Anna Jaworski:   29:15
Sure. Absolutely. Well, I love it. And I certainly have learned more about Ivemark Syndrome now that you have informed me what it's all about. I think you're the very first person I've met who has that condition. Thank you so much for coming on the program today, Julia.  

Julia Mayfield:   29:35
Thank you.  

Anna Jaworski:   29:36
Well, that concludes this episode of "Heart to Heart with Anna." Thanks for listening today and remember my friends, You are not alone.

Closer:   29:44
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.