Finding a New Direction Through Adversity, a Mother and Son's Story

When David was born with a critical congenital heart defect, Monica's world changed completely. A former businesswoman, she soon discovered she would need to know more about medicine to take care of her afflicted son. This led to a career change that has helped countless others in the congenital heart defect community. Monica will share with Anna how her training helped her as a parent and what she is doing today to continue to be an advocate for her son.

David was born not only with a serious heart defect but also with Hemifacial Microsomia. These two conditions affected him in a variety of ways -- naturally, David's early milestones and development were impacted by his need for surgery and in consideration of his birth defects. In this episode, he'll talk with Anna about how dealing with adversity made him the man he is today.

Transcript

David Sanford : 0:01

Despite having a heart condition, I was able to fully immerse myself in the characters and gave it my all.

Anna Jaworski: 0:12

Welcome to heart to heart with Anna. This is Anna Jaworski and I am the host of this program. This is the fourth episode of Season 13. Today's episode is called"Finding a New Direction through Adversity: A Mother and Son's story." David Sanford was born with Hemifacial Microsomia or"HFM" and a Congenital Heart Defect called Double Outlet Right Ventricle. After five heart surgeries before the age of 10, he now lives with a single ventricle, Fontan Heart. He has been writing stories and acting since he was a teenager. Writing and acting gave him confidence, an escape from reality, and it was therapeutic for him. He earned a Bachelor's Degree in theater arts. He is now a published author of his first book of poetry called"If My Heart Could Talk and Other Poems." David says, writing allows him to create and live through his characters. He believes as a heart patient, he has a unique perspective and appreciation of the world around him. He is also a marine brat and has enjoyed experiences of life in global travels. He wants to share his thoughts with other heart babies to let them know they have options, they can have a great life and they can dream big. In Segment One, we're going to talk to Monica, David's mom. Segment Two will focus on David's experiences and in the final segment. We'll discuss how their experiences have led them to what they're doing today. Welcome to Heart to Heart with Anna, Monica.

Monica Sanford: 1:35

Hi. Thank you for having me. This is awesome.

Anna Jaworski: 1:37

I know! I'm so excited to have you on the program today. Well, let's start by talking about David's birth. Did you know about his conditions beforehand?

Monica Sanford: 1:46

We found out when I was seven months pregnant, so seven months in utero we went and he just wasn't growing as he should. So they sent me to get an ultrasound to check him. And then during the ultrasound actually they called in the Peri-Neonatologist and a Pediatric Cardiologist. So I knew something was going on so.

Anna Jaworski: 2:05

Oh Wow.

Monica Sanford: 2:05

And then that's when they diagnosed him. So he was about seven months in Utero when we found out and since that point we were definitely evaluated very frequently. Once a week or so-- to see his growth, to see how his heart was doing, which allowed for at his birth, everybody that needed to be there was onboard in the hospital and waiting for him to be born in case he had to go straight to a cardiac surgery. Which blessing. He was able to go home for about a week or so before he had to go back in.

Anna Jaworski: 2:37

That sounds really scary. I can't even imagine being pregnant with a baby and knowing that he was going to be born with that kind of heart condition. How did it affect the rest of your pregnancy?

Monica Sanford: 2:48

Well, they had put me on bedrest and said we need to see if he can grow and they gave me a list of food to eat and a list of things I could and couldn't do and, like I said, they evaluated me very frequently and measurements and echoes. I was really taken care of with him up at Bethesda, Maryland, doing all my pre-birth and perinatal care. Well, it was a blessing that we found out, but it was scary to the point where you just literally at one time you're just going,"I want him to stay inside because I know he's safe."

Anna Jaworski: 3:23

Right, right. That's what I hear so many moms say when they find out in utero that their baby is going to be born with a heart defect. Now, did you also know about the HFM?

Monica Sanford: 3:32

We did not until he was born.

Anna Jaworski: 3:35

Oh, so that must have been a real surprise.

Monica Sanford: 3:39

That was a surprise. But we were so focused on his heart that any other little abnormality that would come up and they genetically tested him and they genetically tested me and the father, they tried to play some kind of Golden Heart Syndrome on it, you know, it's some kind of other syndrome and he just didn't have genetically everything that would place him under a syndrome. So it was his heart and his right ear.

Anna Jaworski: 4:04

Okay. So how did that affect David as an infant?

Monica Sanford: 4:08

The first couple of weeks he had to go in for a heart cath and then from that cath he actually went into acute heart failure, at that time, and then had to go straight into surgery about three weeks old for his first surgery, His first surgery was probably the most difficult for him. Recovery wise, it took almost three months in the hospital at DC Children's Hospital and then from that point his other surgeries kind of paled in comparison to that one even though they were just as difficult. He was in and out of the hospital with all the other surgeries within a week.

Anna Jaworski: 4:43

Oh, wow! So he had a pretty quick recovery from the other ones. That first one though really must have been terrifying for you.

Monica Sanford: 4:51

It was, but I did everything at that time. You know, we sat at his bedside, of course. I pumped my breastmilk actually to give it to him through his feeding tube, so he was still getting good nutrition. So anything we could to be there. 24/7 me and his dad were sitting right there. So we're very blessed.

Anna Jaworski: 5:10

So your husband was in the Marines, isn't that what I read in the bio?

Monica Sanford : 5:15

Right. And he was in the Marine Corps, just retired after about a little over 25 years, but at that time his command was very supportive and let him stay at the hospital with us as almost 24/7 as well. So.

Anna Jaworski: 5:29

Oh Wow.

Monica Sanford: 5:30

The Marine Corps was very supportive.

Anna Jaworski: 5:31

That is so good to hear.

Monica Sanford: 5:33

Both the kids were born at Bethesda, so. Bethesda was great. The DC Children's National Medical Center was great and the Marine Corps was everything. It worked out perfect.

Anna Jaworski: 5:43

Okay. So I just heard you say both the kids. So is David the first born?

Monica Sanford: 5:49

He is my first born.

Anna Jaworski: 5:51

And then you have a daughter?

Monica Sanford: 5:52

I have a daughter that is about four years younger than him.

Anna Jaworski: 5:56

And she also born in the same area. So I'm wondering-- did the Marine Corps let you all stay in that area until all of David's surgeries were completed?

Monica Sanford: 6:05

Oh No, actually we were then stationed in a couple other areas. We went to Hawaii for awhile and then back to the DC area. There was a couple of major surgeries that we would travel from different areas to go back to DC for.

Anna Jaworski: 6:20

Oh Wow. Now did the Marine Corps pay for the travel or was that all on you?

Monica Sanford: 6:25

We paid for the travel, but the Marine Corps was of course our sole support. I mean to the Marine Corps is supported our movement and our travels and my husband and I, his dad, so we definitely had the Marine Corps support in everything we did.

Anna Jaworski: 6:41

That's wonderful. I know Alex had his first surgery in San Antonio, Texas and of course there are lots of military bases. There were more 24 years ago, when he had his first surgery than there are now. They've actually shut down a couple of them, but the Air Force would fly people into San Antonio if they had children with specific heart defects because that was one of the premiere places to have surgery 24 years ago.

Monica Sanford: 7:10

Right.

Anna Jaworski: 7:11

So it's interesting how the military really does take care of their own and it's heartwarming to see that because our military makes such tremendous sacrifices to keep all of us free and safe. So it's nice to know that we're doing our part to help the families when they're facing a crisis, And they did and they still do. I mean, he had Tri-care his whole childhood and teenage years. Then he was Tricare for Young Adults and now he's Tricare for Life. So the military does really, take care of this whole family. That's wonderful.

H2HwMichael: 7:44

"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: 8:17

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 pretending 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 Jaworski: 8:50

In the first segment. I had a chance to talk with Monica, but now I have David in the studio with me, so welcome to Heart to Heart with Anna, David.

David Sanford: 9:00

Hi. Thank you for having me.

Anna Jaworski: 9:01

But I am interested to hear more about your story. Let's start by you telling me what you felt was more challenging to grow up with-- the HFM or your heart condition?

David Sanford: 9:17

Well, apparently it would be my heart condition because you know, having five surgeries pales in comparison to my ear. But there were also a lot of challenges with my hearing where I would have to sit in front of the class and I have to ask people what they said because I couldn't hear them. But the number one thing in my life that gave me the most difficulty was my heart condition and just not being able to breathe and having shortness of breath and all of that. So...

Anna Jaworski: 9:47

Yeah, that would be really scary. Okay. David, so you're the first person I know who has Hemifacial Microsomia can you tell me exactly what that entails? We've already said there's an ear problem. Sounds like there's a hearing problem as well.

David Sanford: 10:03

It's basically like a facial deformity of my right ear where my right ear is bent and it gave me a 50 percent hearing loss and like I said earlier, that moment sitting in the front row of the classroom or having to ask a person again what they said because I couldn't hear them or things like that. And I remember moments in my childhood where we had to do auditory testing when my parents would stand behind me and like snap their fingers on each side of my head to see which way I would turn. And they knew that my right side, I couldn't hear them as much. That's when they realized my hearing was less.

Anna Jaworski: 10:46

Right

David Sanford: 10:47

And also my jaw. My jaw is a little deformed too, so it makes it a little harder for me to eat and breathe sometimes. But number one problem I've had is my heart. So

Anna Jaworski: 11:01

Okay, I used to be a teacher of the deaf and I had students who would have a hearing aid on one side. They'd have a receiver on one side and it would transmit the sound to their good ear. Was anything like that done for you when you were younger?

David Sanford: 11:19

Well I've never had a hearing aid, but I am classified as hard-of-hearing because of it. I remember having to wear like a headset in class sometimes so I could hear the teacher. It's things like that. The right side of my body is smaller than my left side, so my ear and my jaw and my bones are just smaller.

Anna Jaworski: 11:46

So did that also affect the growth of your teeth on that side?

David Sanford: 11:51

It did, yeah. It did.

Anna Jaworski: 11:54

I imagine it also affected your speech development?

David Sanford: 11:59

It did. It took a couple of years for me to learn how to speak and I guess go to speech therapy. And

Anna Jaworski: 12:08

so you did speech therapy in the schools?

David Sanford: 12:11

I did. I had a special aide. I wasn't in any special education classes, but I did have aides come into my classroom with me and help me with my work on certain things.

Anna Jaworski: 12:28

So it sounds like you were fully mainstreamed, but you just had a little bit of extra assistance. Is that right?

David Sanford: 12:35

Correct.

Anna Jaworski: 12:35

Wow. That is great!

David Sanford: 12:37

Correct. I went to regular public middle school, high school, college, but in middle school and high school I did have aides who helped me.

Anna Jaworski: 12:47

Did you also have some assistance when you went to college?

David Sanford: 12:50

No, no. I didn't other than my family, but no, I went to college on my own.

Anna Jaworski: 12:57

That's great. There are some programs that can help people who have hearing impairments in the colleges, like they'll provide interpreters or note takers, but it's pretty awesome that you didn't even need that and you went into a pretty physically demanding major if you were in theater.

David Sanford: 13:20

Yeah. It is. I mean, the biggest thing that I've come to learn what theater gave me, because of the way I look, is it gave me a lot of confidence and it gave me a way to escape reality from my heart condition, and it's something that I could control. Overall, I learned that it gave me a visceral experience and connection to the characters that I was playing on stage that I could use that ability to write my characters that way.

Anna Jaworski: 13:49

I just love that. That's awesome. So you were using the adversity that you had to face. I know how kids can be. I know that sometimes kids can be very cruel and I'm sure that it wasn't easy for you growing up, especially as a military kid going from school to school. That can be a challenge in and of itself, but then when you complicate matters by having a facial deformity and having a heart problem, I can imagine it was even more challenging. Were you ever bullied when you were in school?

David Sanford: 14:21

Oh yes. Oh yes, of course.

Anna Jaworski: 14:25

So that probably made you very sympathetic to some of the characters that you were coming to portray in theater, if those were any of the kinds of plays that you were involved with.

David Sanford: 14:37

Yes, it did. I was also interested in psychology. I took psychology electives, so they also gave me an interest in the mindset of my characters that I was able to write. Another difficulty for heart patients is the psychosocial aspects of society where they have to just understand the psychology and the sociology of how they're going to be able to adapt and function everyday because it's a constant thought in your mind having a heart condition or any medical condition is a constant thought. But there's a poem that I wrote in my book actually called'My Heart is Always on My Mind' and it's to the point,

Anna Jaworski: 15:19

Yeah. I have several friends who would probably totally be able to relate to that because they're constantly having to deal with issues with their heart. It's interesting, though, because my son was born with a heart defect as well and he's had three open heart surgeries, but his heart is not always on his mind and he gets annoyed with me sometimes if I talk about it too much.

David Sanford: 15:42

You know what? Honestly, now that I'm older, and my bullying experience had been nearly 20 years ago. I've grew up and I was healed and all of that, but I can look back at it now and think it gave me a deeper comprehensive view of everything that went on that ultimately made me see everything differently now and I'm stronger because of it. So

Anna Jaworski: 16:05

Yeah, if the experience doesn't kill you, it makes you stronger.(laughter)

David Sanford: 16:09

That is right.

Anna Jaworski: 16:11

I was always the smallest girl in my class and I was often the target of bullying as well because I was always so little in the last one chosen to be on any of the teams and yeah, that wasn't fun, but I do think that made me stronger, it made me more resilient and it made me focus on other things. I knew I wasn't going to be a star athlete because I was too little, but that's okay because math was my big area that I was excited about-- math and science of writing. Those were things that interested me.

David Sanford: 16:40

Well, yeah, that's, that's another thing that you just mentioned was having grown up and learned my limitations of what I could and couldn't do. So when I found writing and theater, it was the first thing that I discovered that gave me purpose in life and something that I like to do and that I wanted to ultimately foster and make into a career someday. I have and I'm very happy about it. The experiences that I've had, you know, you mentioned the military. A great thing about the military is you get to travel around the world and learn how to adapt to different situations and meet other people, different people, so you get to take bits and pieces from every place you visit to incorporate in your stories. I've got to hear a Holocaust speaker speak about his story and I've climbed to volcanoes in Hawaii and I've published a book and as much as my heart condition has limited me to certain things, it's given me obviously a deeper perspective and greater experiences as well.

Anna Jaworski: 17:54

Yeah, it sounds like it. So tell me about your sister. Are you and your sister close? Four years apart in age and you're different sexes, so a lot of times that means that you wouldn't play together so much or you wouldn't have common friends. What was it like for you?

David Sanford: 18:11

Well, my sister is like my life, so yes we're very close. My family and I wanted a home video of how close we have to work. We always hugged each other and made each other laugh. But you know now, now that we're older, I mean she does still make me laugh and take care of me. Her not having a heart problem, she has a lot more independence than I do. I love her and I'm happy that she is where she is in life. She's starting to be a teacher right now.

Anna Jaworski: 18:44

She's a helper. She's a helper kind of person.

David Sanford: 18:47

Yes. Yeah.

Anna Jaworski: 18:49

That's neat. So tell me, David, about what made you decide to get involved in the arts because it seems to me that the arts are where you have just been able to thrive and really find your voice.

David Sanford: 19:04

Yeah. I was able to find my voice there when I started acting. Like I said earlier, it gave me something I can control and it gave me a lot of confidence and I ultimately learned that it was something that I was supported. I was never bullied. People actually supported me and actually liked what I was doing and helped me out and gave me the best experiences that I could doing it and I've been in amazing plays. I've done Alice in Wonderland and Christmas Carol, Secret Garden.

Anna Jaworski: 19:36

Oh, I love The Secret Garden. Okay. Usually kids who are bullied become kind of introverted and shy and they're not the kind of kids that you would expect to see on stage. When did you first start acting?

David Sanford: 19:51

I was around 10 or 11. My family night we started with an acting agency in Miami, Florida.

Anna Jaworski: 20:00

You just went straight for the big time.

David Sanford: 20:02

Yeah. Yeah, I did.

Anna Jaworski: 20:04

It wasn't like this started in school plays or at home with your sister doing little plays. You just decided,'I want to act.' And you went for an agency?

David Sanford: 20:13

Yeah, I did. I mean, I auditioned for TV commercials and films and learned a lot of geeky craft things of how to put out your name and what a headshot and resume is and it was just like the very basics of the language and mechanics of what acting was because I was a kid and then when I was a freshman in high school, that's when I really got serious about it, where I did four years of it, four years of high school and it was a lot of fun.

Anna Jaworski: 20:44

You did four years of theater in high school?

David Sanford: 20:47

Yes, I did. And my aunt actually, she owns us theater company called Beta, B-E-T-A. I have watched her plays growing up because her daughter, my cousin, has been acting since she could walk and breathe. I mean she did Disney for 10 years, so.

Anna Jaworski: 21:05

Wow. Wow. So it's kind of in your blood?

David Sanford: 21:09

I would say so, yes.

Anna Jaworski: 21:11

Awesome.

David Sanford: 21:12

Despite having a heart condition, I was able to fully immerse myself in the characters and gave it my all and really project and use my entire body to perform for the audience. It was ultimately an escape. It was fun.

Anna Jaworski: 21:32

Absolutely 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.

Rejoiner: 22:17

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: 22:35

David, before the break you were telling us about how you decided to get involved in the arts because it's part of your blood with your aunt being involved in the arts as well, but you also said in the last segment that this is what you do for a living, so can you tell me a little bit more about that?

David Sanford: 22:58

Well, my main priority is writing. I've been writing songs since I was 12 years old, but yeah, since I'm out of college now, I do try to go on auditions regularly and try to find things that I can do and it's just something that I love to do and like you said, it's in my blood and it gives me an escape and something that gives me control.

Anna Jaworski: 23:25

So have you actually received a paycheck for your acting? Because I had a son who was an actor too, and it took him a long time to get a paycheck. Yeah. Well it's funny. I actually did once because my mother, my sister and I, when we were living in Camp Lejeune Marine base in North Carolina, we had the chance to go to Wilmington to be an extra on One Tree Hill, the TV series, and we got like a good payout from that. It was a great experience to be on a live TV show set, so... Yeah. That's exciting. Now, do you do local theater?

David Sanford: 24:01

Yeah, we have two local theaters in our area that I try to... I research and try to find auditions for and I've gone to workshops for. You know-- any, any bit of exercise and exposure to theater-- it all helps.

Anna Jaworski: 24:19

Absolutely. Why don't you tell us about your book.

David Sanford: 24:22

My book is'If My Heart Could Talk and Other Poems,' it's on Amazon and Barnes and Noble.com. It's just a collection of poetry, of my observations and experiences of my heart condition. It's a story of my basically 27 years of life and it was very therapeutic to write. It was very healing to do, to put all my thoughts down on paper, because I'm not a good speaker, but actually I have a poem in the book called'My Voice' that I say, the minute I put a pen in my hand, I found my voice. And that just says it all right there. But I have never been a good speaker, but if you give me a pen I could articulate what I want to say

Anna Jaworski: 25:06

Right. I'm exactly the same way, David. For me, it was very healing to write my first book. My first book was about my son's congenital heart defect and I was just so afraid that I would forget what I needed to know, so it was nonfiction and so I had written all these things to be aware of-- what medications,

David Sanford: 25:29

Um hmm

Anna Jaworski: 25:29

the names of the medications, what they did and why, why my son might need them in surgeries and what normal anatomy looked like and what certain heart defects look like. And I thought I was done with the book and my dad looked it over and he said,"Well, that's nice, but where's your story? Nobody's going to care about all this information without your story." And, David, I didn't think I could write it because I was still living it and it was kind of hard to articulate-- like what you were saying to talk about it, but I just sat down in front of my computer and poured my story out through my fingers and...

David Sanford: 26:10

Yes. I experienced the same exact experience. I actually wrote a story once when I was 23. That's a couple of years ago now, but it's my next project that I'm working on is. It's a YA book about two heart patients who help each other with a bucket list.

Anna Jaworski: 26:29

Hmm. Neat.

David Sanford: 26:29

And that story at. Yeah, and that story just came to me fully formed and I wrote it with such ease.

Anna Jaworski: 26:38

Yeah.

David Sanford: 26:39

It was just one of the funnest experiences I've had writing.

Anna Jaworski: 26:42

Oh goodness. So that was meant to be. That sounds awesome.

David Sanford: 26:46

No, my mom, literally when I had the idea, I had the entire story formed out in an hour and my mom was like,"Okay, Michael, you have to write that and that's it. That's the one that you were meant to write. And I did. It took seven months to write the first draft and I edited it like 100,000 times and I put away, I put it aside for awhile because it was just my mind was just turning into jello. Writers have writer's block and frustration and all of that, but it's been a couple of years now and I'm feeling ready to tackle it again.

Anna Jaworski: 27:21

Sure. Pull it out, dusted off. That's the best way to really make your story tight and to be as objective as possible, because now when you read it, you're reading it with fresh eyes, because it's been such a long time since you picked it up again.

David Sanford: 27:38

Yeah.

Anna Jaworski: 27:38

Yeah. Oh, my gosh, I can't wait to read it. It sounds really amazing. Well, let me get your mom back in the studio. Welcome back. Monica. It's probably been exciting for you to hear your son talking about some of the things that he's interested in, but

Monica Sanford: 27:52

I do.

Anna Jaworski: 27:52

I have two questions.

Monica Sanford: 27:54

I do.

Anna Jaworski: 27:54

Yeah.

Monica Sanford: 27:55

I love hearing it.

Anna Jaworski: 27:57

I do too. I love having a mom and son on the show. i don't get to do that very often, so if it's kind of special.

Monica Sanford: 28:01

Yeah, and well he may not remember it, but when he was about three years old he did a little walk on part with my sister's play where he just had to go out there and pretend he was getting on a train or something and that was his first time on stage and he loved it.

Anna Jaworski: 28:15

So the acting bug bit him early. Is that what you're saying?

Monica Sanford: 28:21

That's it.

Anna Jaworski: 28:21

That's so neat. I'm sure you have a million stories that you could share with your son's acting experiences and his writing experiences. Did he also love to write when he was little?

Monica Sanford: 28:32

He did. He just would sit down and write. We have notebooks and notebooks. When he says with a pen, he literally means with a pen or pencil, so he would just sit and write and write and write little books and notebooks and we have stacks of them.

Anna Jaworski: 28:46

Oh my gosh, I did. I do to. My son also is an aspiring writer and I saved a lot of his early writings. I have a box full of booklets and books like you're talking about, but now I want to focus on you for a minute, Monica, because I know that there's a lot more to your story as well. I know you started out with a degree in business, but then you went back to school to become a nurse. Can you tell us more about that?

Monica Sanford: 29:14

After he was born and he spent so much time that after that first surgery I saw all the bedside nurses that were taking care of him and keeping him alive basically. And you know, of course all the physician and surgeons and with these nurses' help. So I knew right then that that's what I wanted to do. That's what I want it to be. I wanted to be able to, like you said in your book, you write down things, you write down the medications, the anatomy, the physiology. That's what I did and I said I need to go to nursing school to learn how to take care of my son. And so I was a cardiovascular nurse for over 15 years and then went back to nurse practitioner school and now see adult cardiology patients. So my main focus right now and my kind of purpose is definitely making this area in Florida at least aware-- all the providers aware-- of adult congenital specialty centers. So anybody that comes in to my cardiology clinic or any other facility in town, because I work at two facilities, those patients know that there are congenital specialty centers to take care of special hearts. So it's amazing to me now to even see patients that have had no idea and have had not had the referrals to specialty centers, but I think that's changing. The new American College of Cardiology the ACC, just did a whole presentation at their national conference for congenital hearts. I actually won a travel award scholarship to the DeBakey Heart Center in Texas and for their adult congenital symposium. So I'm very active and involved in adult congenital heart patients. They're going to get sick of seeing me and hearing from me.

Anna Jaworski: 30:59

(chuckle) I doubt that. No, I don't think people are going to get sick of that at all. And your son is close to my son's age. My son is 24 and I think I just heard your son say he's 27, so we have literally watched the pediatric cardiology field explode.

Monica Sanford: 31:19

Exactly and thanks to the phenomenal job of the pediatric surgeons and they're helping keep these babies being born with heart defects alive and thriving into adulthood and now we have so many more teenagers and adults living longer and living happier and healthier lives and need specialty care when they reach adulthood.

Anna Jaworski: 31:40

Right. Well one of the things that surprises me is how many people I run into in the community who have a heart defect. Doesn't it surprise you?

Monica Sanford: 31:50

Shocking!

Anna Jaworski: 31:51

Yeah, because it wasn't like that 20 years ago. 20 years ago, I kept praying to see somebody who was in elementary school.

Monica Sanford: 31:58

Right.

Anna Jaworski: 31:59

I was hoping that my kid would make it that far, and then it was, well, what about junior high? What about high school? It has been phenomenal to watch the progression of pediatric cardiology or congenital heart defects as more and more of these kids are surviving and becoming older, so what's you're doing is unbelievably important. Hopefully if there are more people like you and more centers that are offering this specialized care, we'll have fewer kids who become adults that fall into those cracks and get lost to care.

Monica Sanford: 32:34

Right, and that's my goal. My goal would be to have every provider, especially in Florida, because that's where I'm from, but every provider, either internal medicine or primary care providers, cardiology, general cardiology, that if they walk in the door and they've had any kind of congenital defect, they need to be immediately referred to an adult congenital specialty center.

Anna Jaworski: 32:58

Absolutely!

Monica Sanford: 32:58

And that's just going to be their basic guidelines of care. The ACC, the American Heart, they've come out with their new congenital heart guidelines so they just need the proper referral.

Anna Jaworski: 33:08

So it's amazing how your son's heart defect has really influenced both of the directions that you have traveled in.

Monica Sanford: 33:18

Oh yeah, definitely. It completely, one hundred percent consumes this family. It consumed our life after he was born. It was life changing for all of us, but in a positive way. So and now my son and other heart patients are living their dreams, are living happy, healthy lives, and I get to witness that. It definitely...

Anna Jaworski: 33:39

And to have a hand in it. You don't just witness it, but you have a hand in it and I think that's amazing. Yeah. Yeah. Oh, I just love it. Well, I can't believe how the time has flown, but it's already time for us to close the show. So I want to say thank you both to Monica and David for coming on the show and for sharing your experiences with us. Thank you so much, Monica.

Monica Sanford: 34:01

Thank you very much.

Anna Jaworski: 34:02

Thank you so much, David.

David Sanford: 34:05

Thank you so much for having us,

Anna Jaworski: 34:07

It has been a lot of fun and I will have a link on my website that will take people to find a copy of your book, David because I'm sure people will want to buy it now that they've heard how you put your heart and soul into it. It just sounds fabulous and that does conclude this episode of Heart to Heart with Anna. Thanks for listening today. Find us on itunes and subscribe. And remember my friends, you are not alone.

Conclusion: 34:33

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.